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. Consumer Self-Care inilealth. NCHSR-lesearch'Proceedings /tries.'

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National qpnter-for.Health Serv-ices Research..(DHBV/PHS), Hyattsville, Bd..DHEN=HR4-17-3181Adg 77 % .

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46p.; gpotndtes say be marginally legibleNational Center for Health Services Research, ()Hideof Scientific and Technical Information,, 3700 )

Vest Highway,'Rocs 7=44, kyattsville,,Haryland782 (BRA 77-318:1); National.TeChnical Information

Service, Springfield, Virginia,22161 .. .

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BURS PRICE NSF - 50:83. HC -$2.06 PlpA Poitagd.DESCRIPTORS *Citizen Participation; Community Action; *Consumer

'Protection; Health.Personnel; *ealth Services;Odtreach Programs; *Resehrch Needs; *Self Help,-Programs'

ABSTRACT - '' This-,conference .report prisents.Kgsearch strategies

liSid,ethical considerations concerning consumer participation-in the'health care process. Section.1, background,,lists the beginnings ofself-care in health, the prograis that have sprunC-up0and theirsupporting organizations, and the medical tasks perforied by the',consumers in ,those programs. Section 2, proceedings, defines consumerself -care, explains'research strategy, topics and-particulars, and

. ethical Considerations.. The summary of-recommendations proposes fourareas of research: (1) the parameters of self-care (short-term, .

research is suggested), (2) consuier- cniented researchr

national

I'Lsurvesis recommended which would be supplemented by a eview. of 1

literature on consumers coping), (3) health .care provid r research(the role of the provider, the assessment of his, and a review of hiseducation, and (4) demonstrations (the settings and' populations aredescribed). (Appended are four papers dealing with the ccbcept ofcaring in the selfcare movement, an international perspective ofself-care, the health beliefs of the U.S. population, and researchand>demonstration'isshes in self -care. The paper on research andemonstration includes 1,46 references.) (VB)

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RESEARCrl PRdCEEDINGSSERIES

COnsumerSelf-carein Health

August 1377

US, DEP A {MENr OF HEALfH, EDUCATION. AND WELF4RE0 Mb Service ....

Heal b Resources AdministrationNational Center for Health Services Research

fr/ LAW Publication No. (IRA) 77-3181

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U S DEPARTMENT OP WEALTH.DUC.ATION & WELFARE

NATIONAL INSTITUTE OFEDUCATION

TMIS DOCUMENT HAS SEEN REPRO.DuCE0 EXACTLY AS RECErvED CROMATHE PERSON OR ORGANEAT,ON ORIGIN-ATING IT POINTS OF voErf OR OPINIONSSTATED 00 -NOT NECESSARILY REPRE-SENT or r lEoAL NATIONAL INSTITUTE OFEDUCATION POSITION OR POLICY

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tiaifonal Center for Health Services ResearchResearch Proceedings Series , =

:1,The Research Proceedings Series is pu<ished by theNational Center for Health Service's ResearchfNCHSR)-to extend the availability .of new re-search .announced at conferences, symposia acidseminars sponiOred or supported-by .NCHSR. Inaddition to publishing the papers given at keymeetings, this series includes clikussions of re-sponse' v.:benever possible. The series is intendedto help meerthe information needs of health serv-

providers and others who require dirett accessncepts aria ideas'evo'hing from the exchange

of research results. r

Abstract

Consumer self-care in health is, gniwing move-ment whereinlay persons increasingly'fiinction forthemselves to prevent, detect, and treat healthproblems and promote gdod health in a mannerwhich strpplements or substitutes for professionalservices. The movement can be traced to social and'health legislation of the 1960s, changes in nursingtheory, and the growth of self-help 'groups (also,the more recent Feminist movement, as well thegrowth of women's centers and feminist treirapy-

-collectives have been influential populariza-tion

the populariza-on of self-care in health). The confe'rees have

recom nded a broad range of new research on. - the to of a survey of 'consumer and health care

prod er attitudes arid practices regarding morett consumer involvement in the health care process;

and the demonstration of new self-care theory andtheie yfuation of existing self-care programs andtheory in terms of costs, efficiency, and satisfac-tion. The conferees alsci discussed ethical aisregarding.research risks, the quality of sel,and "at -rut populations. Appended are four pa-pers describing existing programs, the history andlogic of the movement, and inferences concerningthe consumer's desire for increased self-care.

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,ACknoWledfie ents

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The conference was organized by John D. Gallic-chio;Research Psychologist of the NCHSR Divi-sion of Health Services Research And -Analysis,who also prepared this report. Harr ei Doh n Rush:ing of the Division provided administtative sup-port to the conference. George 'A. Silver, M.D., ofthe Yale University School of Medicine. pas,theConference Chairman. Grouli Leaders' were JerryWeston, Sc.D.:-and Robert M. Thorne', Ph:D.. ofNCHSR. Rapporteurs were Kathletri ktug. ph.D..and,james Ullom, NCHS11, Lee B. Sechrest,Ph.D., Florida tate Univ ersny :and Eva J. Safber.M.D., Duke Uritversity Medical Center..Presentagtions were made by Dr. SiiV-er. Gretchen V. Flem-ing and Ronald M. Andersen, Ph.D..,both of TheUniversity of Chicago. Ilwrence W. Green. Ph.D.,The johns Hopkins University. and Lowell Lev Ili.Ed: D.. Yale University. Earl conceptual planningwas contributed by Sherman R. Williams. Thejohps Hopkins,Univ.ersitv.

Foreword

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The National. Center for Health Services Research(NCHSR) has an irinatt interest in the quality ofinteraction between the citizen and the Nation's'health resources. Research on. innovative healthcare histdric.ally has focused on the professionalhealth care provider to the eiclusron of significantlay participation in the _process of delivering care.Any complete review. of the inocess must necessar-ily include the consumer's sole. The NCHSR re-search conference on self-care _was convened toforint...date the research issues inherent in the self-

movement, and to further, understanding ofthe Nation's research needs regarding -consumer .paiticipation in` health care process. The at-tendees responded by posing incisive researchquestions as yell as by addres;ing leading ethicalissues involving the responsibilities for high qualityhealth care and idintifying the best interests of theconsumer. Although the group was not large, itprovided representation for pkobletns of national

-scope and the attendees offered a -wide-range di-versity of opinioh. This conference report is arteffort to reflect those opiriionels faithfully as

.Gerald Rosenthal, PH.D.Director -National Center for Hearn.' Services ResearchAugust 1977.

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. .1 BACKGROUNQ3 PROCEEDINGS

Definition/ Research strategyResearch topics and lag rticularsEthical considerations

8 SUMMARY OF RECOMMENDATIONS

'APPENDICES10 A. George A. Silver, MD., '`The 'Care` in Self-care"13 B. Lowell' S. Levin, Ed.D. "Self-care: An International Perspective"19 C. Gretchen V. Fleming and Ronald Andersen. Ph.D., "Health Beliefs of

the U.S. population: Implications for Self-care"20 D. Lawrence W. Green, Dr. P.H., Stanley H. Werlin..Helen H. Schauffier,

and Charles H. Avery. M.D.. "Research and Demonstration Issues inSelf-care: Measuring the Decline of Medlcoceptrism"

37. LIST OF.COKIFERENCE PARTICIPANTS

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Background

The Naticinal Center for Health Services 'Re-search (NCJ-ISR) regolarly calls upon consumers,policymakers, health care providers, and membersof the -research community to engage in criticaldiscussions of research needs and strategy. Thisdocument is an NCHSR staff report oo.Irsearchissues nd recommend,ations of- a conference onthe -glowing contunisr self-care movement in

`health. :-The conferees were faced with the task of isolat-

ing research strategies needed to answer impor-tant questions about the efficacy of consumerself-care activities. Self-care is very much a socialissue rather than a technology, and therefore doesnot lend itself easily to quantifiable research ap-proaches. That state of affairs is reflected in thereports emphasis on ethical issues, and in the gen-erality of its recqmmendations. The task is toapply objectivity, internal validity of design, andgeneralizability to future researchactivities on this

.issue.

The beginnings of consumer self-care in healthmay be traced to initiatives such as community ac-'uon started under the Economic Opportunity Actof 1964, and to consumer participation encour-aged-by legislation establishing the Regional Medi-cal Programs in 19,65. The beginnings also may beu-aced to the development of changes in nursingtheory encouraging self-care, and the develop-ment and popularization of group dynamics andprograms. utilizing behavior modification tecti-niques addressed to such problems as weight lossand smoking.' -

But other antecedents Ire involved which areI\ not related to legislation, group membership, or

patient role. The popularity of the Nader move-ment,- the questioning of corporate motives andproducts, and revelations in Federal governmentare precipitating a philosophy of consuiper watch-fulness.and activation. Most changes probably areoccurring kmong middle income groups, who aregrowing aware of options within numerous proc-.esses-that affect them. -

Recent problems with inflation, and 'energysupplies have fostered a growing attitude that con-sumers must now attempt to conserve a -wide range

'of resources to avert economic and physical de-

' Gems. LaIrrenes at. -itesaird. and Dessonstramon Issues smAelf-vorllimmarrng the Dec5oe of Sleviscoernanam" See Afrporhz D March 15163

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struction, both on personal and national levels.The feeling has caused a. national uneasiness orconcern regarding the manageability of resourcesand inflationary processes. This concern can ex- 1

tend to health attitudes and personal'healthanan-agement, and may not be related to attitudes to-ward personal physicians and the quality &f carethey deliver to the individual.

During the month of July 1976, Barnkand No-ble, New York, noted record sales of publicationsof the do-it-yourself .variety, and health topicswere among the five best eIlers. Author-,physicians such as Sehnert, Vickery and. Fries, andSamuels and Bennett have written consumerHealth guides that hat'e been very well received bythe public. Such sensitivity to the consumer sec-tor's needs also is beginning to extend into medicaleducation. For example, the University of Califor-nia School of Medicine (San Francisco) has agraduate program in Health Psychology whichaims to adapt the. delivery, of health-care to con-sumei2needs and capabilities. Also, a number ofagerfcies in the U.S. Public Health Service are en-gaged in a cooperative program to develop a cur-riculum of patient education skills addressed tophysicians in primary care residencies, and espe-cially family practices. Among other things, theprogram is interested in teaching physicians to as-sess patient competency to.perform medical tasks

s well as to consider delega. ting certain tasks tof.ir e patient. I; .

n 1975, staff of the National Center forHealth Services Research met with a staff memberof the Office of the Assistant Secretary fori.Plan-ruing and Evaluation/Health to discuss the surveyof a sample of self-care programs. The Office ofthe Assistant Secretary was already supporting acontract to survey health education. programs, andNCHSR suggested providing additional resourcesto increase the survey's attention to programswhich had a self-care orientation.

The survey revealed programs that were charac-teristically new, lacked in-depth evaluation's', andaddressed a wide variety of health problenis 2

These programs were sponsored by university cen-ters for continuing education, cooperative eaten-,

ArtImr D Lade'. Inc_ A Ssny7 of Gasmen Math tbasise, Programa, report 10°HEW (Mumma! Techascal Information Sersace, Springfield. VA 5 volumesorder number; P13 251 77S, P11.251 774, PS 251 775). 102-156

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.sions, regional medical p;ograms, health_ mainte-nance.' organizations, educitional centers forcategories ordiseaie such as diabetes, freestand-ing clinics, local health departments, mutual aidgroups such its parents group involved with thesudden infant death syndrome (SIDS), and the Os:tomy Shciety.i.

Examples are as follows! 3

The course for the activated patient atGeorgetown-University teaches consumers to usethe health system, understand:preventivemedicine, and perform self-care tasks such asthe taking of blood pressure,-use of the stetho-scope, measuring body temperature, first'aid, in-jection, and diagnosis. .

The Columbia Medical Plan. Throat CultureProgram in Columbia, pryland, teaches par-ems to obtain throat cultures from theirchildren. ,

The Free-standing Health Center in BcIstonprovides a broad range of self-help education towomen on topics such as self-examination-andgynecology.

The Group Health Cooperative of Puge't Soundaddresses self-care of both diabetes andhypertension. .

The Regional Self-help Medical Care TrainingProject (RMP at Salt Lake City. Utah) providesself-care educatiory to rural residents on a broadrange of preventive practices. simple medicalprocedures, and diagnoses.

The Reston-Georgetown Medical Center offereda 10-week course in 1975 to introduce partici-pants to thedical decision-making through theuse of protocols for 65 common complaints.

The University of Arizona's Cooperative Exten-sion Serzvice offers self -cafe education to ruralresidents, in order to reduce their "risk age"through behavior change.

The following list of medical tasks performed by-consumers in these programs is limited, but manytask.l.address a number of health 'problems with

-multiple effects. 4

1. Diagnosis of common conditions

2. Insulin injection

3. Urine testing

4. Breast self-examination

5. Cervical self-examination

6. First aid taski

7. The taking of blood pressure

8. Obtaining throat cultures

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9, Hyposen.sitizatiOn injections

10. Ear wax irrigation

12. .Physical therapy for arthritis

(Note that the list includes only tasks that arenormally performed by a health care provider and

' does not address many preventive and mainte-flank- tasks, though they too are addressed in thesurveyed .programi):.

The NCHSR Research conference .on Con-sumer Sett-care in Health was held at the .DullesMarriott Hotel, Reston, Virginia, on,lvfar6 24,25,and 26, 1976. The conference was chaired,by.George A. Silver, M.D., Yale pniveAity School ofMedicine. Although the group was relatively small,this conference reportedly was the fiat nationallevel meeting on the topic." The conferees-were

4' charged with addressing the need for research, thenature of such research, and the outcomes thatmight be expected from _organized self-careactivities.

Several papers were presentee early in the meet-ing (see Appendices):

A. "The 'Care' in Self - care," George A. Silver,M.D.; Yale Uniyersity.

B.' "Self-care: An International Perspective,"Lowell S. Levin, Ed.D.: Yale University.

C. "Health Beliefs of the U.S. Population: IMO-cations for Self-care," Gretchen Voorhis Hem,ing and Rodald Andersen, Ph.D., Thg Univer-sity of Chicago.

D. "Research and Demonstration Issues in Self-care. Measuring th*Decline of Medicocen-trism," Lawrence W. Green, Dr. P.H., TheJohns Hopkins university; Stanley H. Werlinand Helen H. Schauffler, Arthur D. Little,Inc., and Charles H.; Avery, M.D., Universityof California.

After the papers, the meeting divided into twogroups of approximately 15 persons each forsimultaneous discussion of the topics. During thelast three hours of the cOnferente, the membersmet in plenary session to compare recomnienda-,tioos. The main pur se in dividing the groupduring the work sess n was to reduce the num-

. bars in a group, aid contvolling-diSoussion,-andto facilitate individual participation. The groups

\were moderated- by Robert T1iorner, Ph.D., andJerry Weston, Sc.D., of NCHSR.

The structure of the conference was a vehiclefor addressing the self-ca're issue: and is,not, re-flected in the format of this report. This documentis an NCHSR staff report that "attempts to sum-marip-the major themes discussed, and is not anofficial report.of the cooferees.' In 1973 Swfuerland andCopcnkagro werOsitel of Meernitional soortials.

4 PrOCOACIIMO:

DefinitionThe/process of defining consumer self-care re-

vealed that the attendees tended to, view theAmerican consumer as one who was not receivingenough information to attain a level of health con-sistent with the Nation's cultural and technologicalcapacity. Self-care was considered a potential re-squrce for improving the general quality of life,but not a process that should, be allowed to shiftattention away from an inefficient health servicesdelivery system or to shift blame for such inef-ficiencies from the health care provider totally tothe consumer.

A distinction was made between traditionalhealth education and the self-care educationmodel: self-care focuses on the acuve consumerand his interaction with the health care system,while traditional health education appears to bemore professionally oriented. In the former, con-trol of the nature of consumer interaction with thehealth care system and the progression of healthcare problems is more in the hands of the-con--sumer. Also, self-care education, in its relativelybrief history, has tended to use more non-traditional educational methods that differ in con-tent and/or mode of delivery. It was stated thatself-care education is more life-style oriented thancontent oriented. Actually, traditional health edu-cation theorists might argue that the latter distinc-tion is minimal; certainly Irwin Rosenstock putsconsiderable emphasis on life style in his "HealthBelief model of health behavior. The traditionaltheorist might concede, though, that the success ofa comprehensive program of consumer self-care(by whatever measures) is more dependent, uponcertain life-style variables than adherence to a re-

Fame e'd -by -health -altrcatratrcontent.

If the conferees showed general agreement intone regarding the positive potential of self-care.there was a subtle polarity of ehe group regardingthe locus of control of the self-care program. Thisrevealed itself as a slight disagreement over wherethe ultimate responsibility forhealth care activityrests: with the consumer or with the health care

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. .professional. Perhaps.the question should be con-ceived as research to determine which control pro-vides better motivation, more satisfaction 1 'effi-

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ciency, and better health.,

Primary care was considered to be a Major targetof self-care processes. But there was some dis-agreement as to whether primary care is an areathat the professional health care provider is willingto concede to self-care. One member said that theprofession may ndt want to give. up any or its"turf," and a reply was that primary care containsa large 'number of areas the profession is perfectly,willing to give up. Another participant stated thatthe profession can be expecfed to challenge thoseportions of the self-care movement that relate to e .

specific tasks performed by constpers yet othertasks can be predicted to be .turned over willinglyto the movement. There 161lowed some disculsionabout the real need to pblarize self-care activistsand the medical profession: the fact is that mostprofessionals prbbably proyide some degree ofself-care education for their patients, and that re-search's approach to addressing self-care and thehealth profession should be to look at that end of -

the continuum, such as Dr. Donnell Etzwiler ' inMinneapolis and those who are emphasizing theactivated patient. It was further noted that at aninternational symposium on the role of the indi-vidual in primary health care (Copenhagen, Au-gust 1975), a similar polarity existed. Proponentsoccupied positions on a spectrum ranging fromthe attitude that there were some health care ac- .tivities the consumer mig assume, to the moreextreme Illichian 2 view the consumer activitieshave more or less sole legitt acy in the careprocess.

....:114.granift.felt.J.hat-any.Acitatimatat.M.ISE_care process should address the goal of enhancingthe ability of lay penone to Make decisions regard-ing their health care and' also to be able to recog-nize and exercise options of care. These-options

Dolma D armlet. 14.D.. Diabetes Diocanon Center. haw:land, St LoutsPars Meet.= Lracee. 14,nnespoits. Mennesosa. He has stechts1 a uenraransi reinasenhtp betneen the phyuctaa sod has chest-

r Ina Dinh, Maria Nrstaa Drip-wars of Haden (Pantheon, New Yort.1976)

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should range from the use °lithe traditional niedi.- complete. It yvas recommended that the adoptedzi

cal care model to-activiiies supplementing profes-. definition contain an element of substittition, atsional care, as well as.-to activities that substitute - the least. ..._ .

for, professional care. It was generally agreed that As pUt forth, the definition is-., .

such care should relate also tosthose who are closeto the subjedt.

Selficare and self-help are parts of a matrix in4

the health-cars'Process whereby lay persons canis: Discussion also centered around distinctions be- - actively function for themselves and/or others totween the concept, "self-care". and the similarly (I) prevent, detect, or treat disease, and (2)popular concept of "self-help.- There was concer'n promote health so as to supplement or subititule

_ that die, foimer term does not adequately imply forother resources."mutuality," or people aiding one another, but '4' 'rather emphasizes 'strictly personal health care. The key elements of the definition are that self-Another view was that the term -self-help- was not care deals with the v.'ell consumer and the sick pa-

.:,quite adequate for the group's rise, as it cciriecf. tient, and that _seIS-care may occupy a place in aconnotations of organizecicdnsumers, such as Al- spectrum, from the consumer being co-nesponsible

4 coholics Anomyinous, with common problems. In for a freatment regimen to the providereing un-.general, no real momentum was built up to drop involved in that regimen. ..the term. "self- care" in favor of "self-help,- but itwas agreed that the conferees would treat the two Research, strategy t -

terms as_

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very nearly identical. The research needs and methodologies that areOne of the First moves toward formulating an indicated for self -care are not necessarily self-

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acceptable working definition was a proposal to evident. It has not been easy to evaluate the effectslabel self-care as "the substitution of activities . of most forms of medical care, and-the confereesnormally carried out by a physician. The group expect that self-care will prove no easier.generally felt that the definition should be consid- The early implementation of a' research pro-erably broader. with at least.an implication'of new gram 'is essential, as self-care projects and mate-kinds of health ca ;e providericunsumer, interac- rials are, being rapidly proliferated.. It was sug-tions. But other dimensins ago deserved to be gested by the group that NCHSR support short-

taddressed by the definition. (a) the degree of ini- term research on the topic, as opposed to an ern-native on the part of the consumer in recognizing phasis on longitudinal studies which feature rela-Ikealth care needs and taking action, (b) the degree tively "fixed" independent variables. Since theof utilization of traditional. medical services. (c) self-care movement is relatively young, there is awhether care is directed toward the -self or ex- lack of ettablished theory and method, and shortpanded in scope to include others, and (d).the de- term research efforts may provide findings vyhich

gree of adfference to a medical model. It was pro- an assist the movement to achieve a maximum ef-posed ,that the definition address all health care ficiency. The payoffs of longitudinal studies, onconsumers rathethan limit Itself to the patient. the other hand, could be expected .io'he out-Implicit in this is tWneed for self care activities to weighed by thp time lost in generating findings.address preventive care as well as'the maintenance This suggested short-term agenda should addressof chronic and episodic health problems. The lat- research which contains an element of substitu-ter includes crisis health-problems. tion. the lay person providing care which is tradi-

In characterizing the knowledge re,quired and tionally supplied by professional medical person-the activities that the consumer might undertake, net..some interesting terminology appeared. The terms tt was- stated that thg,ultimate objective of a pro-

. "substitutionary'', "supplementary-. and "addi- gram of research should be to assess the effects ofuonal- addressed the position of self-care activities self-care activities upon consumer health and gen.'in relation to traditional health services delivery. eral welt-being. But it was suggested that research -Substitution lies at one end ofthe spicThim, with ers take h liberal approach to the nature of the ef-,the consumer Abstituting his care for that of the feats in question.tons'umer satisfaction, consumerprofessional's. Supplementation would lie some- effectiveness' or coinpeten-cy in illness ,ituation:s,where in the middle-of the spectrum, with the con- and the containment of health care costs aresumer providing care thatas meant to be suppor- examples of outcome measures which should be

--- ....... _..tve..,e.{ .prof.essio.f...44e..k.w.4,ankgael}, vatexe,a,,,,..,.,,,gjAns_timg credence Chan es knowledge ofconsumer self-care regimen is supplemented by a educational content should be desirable` only as in-professional's care as needed). Note that termediate outcomes.supplementary care implies the possibility of in- However, tie stoup was divided on the recom-complete professional care, SQ designed to ac- mended approach to supporting research °him-comodate lay input. At the far end of the spectrum tives. The question was centered on whether tohes that care providecr,in addition to professional emphasize demonstration/project evaluation etcare...Such care carries,implications of working in forts or baseline data and analyses on the currentconcert with professional care that is considered extent of self-care practice in the United States.

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Suggestion's Were made for demonStratiems of ,1 various models of self-care. These should.be estab-

Dished in settings such as: prepaid gro4 pritticekfamilX. practices, multiple specialty clinics, emer-gency medical services Settings. public schools.youth service orgdnizationts.such as the 4;1-1,,arKI a'limited number.of chr nic care or long -term caresettings. NCHSR s warned, to be cautious and

..- selective in the early programming of demonstra-tions, since, for example. disease-specific healthcare education programs appear to be moremethodOlogicak advanced compared to morecomprehensive programs, and NCHSR may beable to capitalize on knowledge gained in some ofthe categorical disease areas:. . .

Many attendees stated that considerable baselinesurvey information is necessary before plausiblemodels 'can be developed which are worthy ofdemonstration. However. nova!l conferees agreedthat baseline survey efforts.should,postpone im--plementing demonstrations: A number of self-careeducation proponents beliele they have isolatedefficacious treatments which need on's to 6e fullsproven in the field. But the conferees generallyagreed on the importancof baseline studies Suchinformaticin should be gathered as both an "intel-ligence network" of self-care projects and a na-tional social survey to document the extent of

.self-care activities in the United States An exam-ple of the need for such,baseline information v.asthat new health care manpower needs and config4

'urations in self-care will remain undetermineduntil we first learn about the health behavior ofthe' population of the United States In gatheringsuch data some considered it important to avoid

_national samples because they might pose difficul-ties in relating the individual to the particular srs-tem of medical care which he uses. In-stead.community-based or Health SY?tems Agency(HSA)-based samples were considered preferable.Others voiced the pinion that a national samplecould address in ividual systems of care whenproperly drawn, d stratified

In .pushing or resolution. the Chairman statedhis undergtanding that the-group recommendsthat NCHSR support demonstration,-activities. al-though more national survey data are necessary.The survey needs are probably the most criticalelement of the two, but acceptable evaluation ofexisting program models requires a degree ofderrionstration. It was agreed that caution is indi-cated in committing relatively large quantitiesLtescigumstotteinonstr alio rt,,,. until national

survey findings can support sound models. fordemonstration.

Children and the elderly were recommended aspopulations that may be most in need of self-careeducation, or m y be able to show the most gainswithin a num r of "outcome" parameters. It wasfurther suggested that research be carried out onthe effects of introducing self-care coursework

into public school curricular especial6 in the lowergrad-es. .

- ,It was suggested that a significant amount of

.self-care research shoulcibeformulated to addressthe family unit and the school system in order totake advantage of what is currently known aboutmores and human der:elopment. The content ofsuch self-care education was preferred to be cdru -.prehensn'e in nature rather than geared to addresscategorical health problems. It,was suggested thatsuch comprehensive self-care'treatment could

. measured against, for example. hearth, serricutilization Patterns and levels. hospitalization.ability days. mortality, and morbidity fates.. Pri-mar, care in general was considered an excellentsubject for research.

The value of consumer education and evaluationacti4ties carried out under categorical diseaseprograms was not distounted. Pioneering effortsFor assigning consumers participative roles in thecare process have cone from programs that.haveaddressed categories of diseases such as diabetesand kidney disease: these programs have oftenproduced useful evaluation methods and findingsas well. In discussing the value .of categorical dis-ease programs in contributing to a body of self-care research. it was suggested that relative diC,ficulties of specific self-care tasks needed to be as-sessed and that many categorical programs alreadyhave data on tasks const_imers can and cannot exe-,.cute safely. Diabetes was a case in point: in theprocess of self-injection of insulin. the diabetic hasassumed a task normally carried out bY a profes-sional. If an assessment of difficulty could be car-sled out on a large number of similar tasks. then"candidate" tasks could be isolated fdr demonstra-tion m controlled settings.

Finalk. a strong strategy recommendation wasthat a portion of-self-care research should focus onthe professional and the changed role he mar as-sume in any.new system of health containing self-care orientation. One was of alteiing the proles-sionars-"set" in relating to the consumer/patient isto introduce curricula earls in the former's profes-sional training that emphasizes aspects of thepatient-professional relationship. It is believedthat such material is currently presented in in:adequate quantities and too late in the profession-al's training process to be effective.

Research topics and particulars1,The4dnferees* recommendations were to estab-

lish hypotheses~about the efficacy,of a defined, setself-care activities and projects, and to demon-

strate efficacy along economic-. care quality. and at-titudinal parameters. Demonstrations of models ofself-care programs mar be classified for example.br their distance from the "medicotentric")point.as described by Gkeen (see appendix D). Design ofthese models should be based upon assessments

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of'consumer and provider attitudes and,beha2,ior,regaiding self:care.,

As part of Asseesing efficacy, it was suggestedthat a tortion of self-care research

competencyaim to

a determine the limits of consumer, competency inperforming various Medical procedures. It wassuggested that, such competencr,is a function of"task difficulty. But task difficulty is'onli one di-,mension of the problem. The objective is to\arr' ayor generate a taxonomy of all [asks that are amen-able to self-care, determine what,populationgroups show most success with specific tasks, and

'determine what conditions are antecedents of suc-. cess. It was' suggested that tasks could then, be as-

si ed "probabilities"-that they, might be success-y performed by specific categories of consum-

ers. Tasks could be assigned probabilities rariging'in difficulty fr,om, for example, care of the feet totonotnetry. Once difficulty levels are known, betterprescription and a.degree of "eliminating themiddleman" can be achieved.

According to the Conferees, a survey effort is re-quired to generate an array' of tasks, relate thesetasks to categories of censuiners, and further iso-late numerous_.conditions under which such tasksare now being.catried out by Amencans. Three

_categories of data. would be collected in such a sur:,sey. (1) population characteristics such as income,ethnicity, education Level, access to services. indthe configuration of available services, a) data re-garding the sampled incidence of health problems,responses to those prol-liems,and self-care taskscommonly undertaken. and (3) data on consumerattitudes, perceived needs, and acce.ptabilivi ofself-care activities. Such a surrey should begin toreveal the current level of individual self-carebeing carried out by the population. as well as thepotential for increasing That level. Essentially, itwould be a large scale-Clescriptise studs of con-sumer health behasior. It was generally :agreedthat the study could pros ide a data base for ex-perimentkintenention. An issue that may nothave been adequately covered was the determina--tion of the real efficacy of self-care behasiors to besurveyed, as compared to traditional medicaltreatments. The meed.for a clinical follow-up wasbriefly addressed, but not in depth. The relatingordifficulty levels to self-care tasks would appar-end, require some type of salidation procedure.Validating data could perhaps be collected eitheras part of the surrey or during the process of car-rying out_experimental,inteiventions using thesurvey as a data base.)

As stated earlier in this report, a number of con-..ferees were concerned that a national samplewould be unable to relate individuals to availablesystems of care, and they therefore recommendedthat the surver(or surveys) be regionally op escn.community-based. Others felt that a national sam-ple could be appropriate, when properly drawnand stratified.

,

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Related to the consurrier, behasior'surviy was. a -

rocOmmendation-that NCHSR support an exten-sive survey of self -care projects, both provider-:initiated and consumes - initiated. The study. byLawrence Green prepared for ,the Conference wascited as an excellent example (appendix D), what isnow needed is a broadening, of the scope of pro-jeers, to be addressed.

It was .recommended that NCHSR collect dataon thy attitudes of physicians and other healthcare providers toward teaching. self-caile.teoh-niques to patients. The survey should includegathering data on provider behavior, i.e., what theprovider actually does about encouragingconsumer-initiated treatment.

Although the conferees agreed on the value ofprimary 'dita, it was recommended that NCHSRnot overlook data already collected from otherudies, under labels other than self-care. For

example, lvfaiy Ann. Lewis of UCLA has closelystudied childhood health and health behavior.Charles E. Lewis is the princikeinvistigitor df theNCHSR - supported Health Services Research Cen-ter at UCLA; which studies problems related to thehealth and illness behasior of patientl,and con'sumers. Also, the National Institute of Mental'Health his supported numerous studies on copingbehavior :inclconflict resolutico. Green andBecker have done a review of the literature on thefamily approach to coMpliance with medical regi-men, reported in International Journal of,HealthEducaizoi:(1975), Lois Pratt has authored-severalpieces on the family and health care,tand a reviewof researchentitled, "The Significance of the Fam-ily in Medication, Journal of Compcirairke Family

, Studies, 4 (Spring 1973). But the conferees em-phasis on reviews of literature was a qualifiedone.One Member slated that he would "...hate to seethe Center spend their money that way. Any re-searcher 'worth.his salt, -before he does a secondalyanalysis, will do a review of the literattire...." theNCHSR Might, however, execute a "small personalservices contract" with someone who has a goodoverview of the literature on behavior -and unat-tended illness.

A"

Examples of other potential sources of datawere. The American Academy of Family Practice,

-the American Ataderny. of Pediatrics, the GroupHealth Association of America,, the American As-sociaqon of Community Colleges, and variousSelf-liealing Workshops in the Ski Francisco Bayarea.

,6Adults wha are currently involved in the health

care system, such as enrollees in health mainte-nance organizationg, were considered: primetargets for .research. Mk°, locli health ,depart-nients and social service settings were consideredittnportant, to the extent that they.hare active out .

teach services. In general, highly organized healthLa* settings and enrolled or otherwise specified'populations were recommended partly because of ,

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hypothesized benefit to the consvner'and partlybecause of the "controlled ens4odnient" they'employ. The school and health, are mg-amp- non.

;'settings allow for controlled introduction, of '41

care treatiment.as well as salid Measurement ofoutcome "variables such) as cost of care: quality oflife, and consumer satisfaction, Furthers there was

'a eneral feeling that self-care could be post use-ful when employed in concert with organizedhealth care delivery systems. The measures of s.ys-tern efficiency and the data that health care or,6ganizations-collect would be useftil tools in self-'care research, as the ultimate goals of .health tare

4- organizations should be nearly the same ascon:turner self -care.

Rural Tesidtnts andthe eld, erly. as special papii-lations,".were considerediAportant but remainedsomewhat unspecified regarding a research plan.The twbogroups merit.special caution-as: in thecase of rural experimentation. it was. generallyagreed that self-care should not be looked upon bs/policy maker's as an easy solution to the geograph-ical scarcity of services. In the case of the elderly.their vuhierable condition makes it essential thatadequate options-for health care be avall4ble tofthem.at all times as part of research- and demon-stration undertaking. This is not..tosas of course.'that self-care intervention should not by attemptedwhen no Other options for care are possible

Ethical coltsiderations

Early in the conference. the attendees On-strated'a sensitivits to risks that mas be insolsedin

`self -care research It as stated repeatedly thatself -care treatment must be used with caution inaddressing the disadvantaged as subjects: the self-careconceptas a research issue must betargeted not only to the disenfranchised. butshould be addressed to the entire spectrum of con-sumers. It Was furifier suggested that initial re-search on the topic should not be carried out onpeople considered "expenmental bs virtue of their

' social condition.".

* .Theview was voiced Thai self -care must not be

looked upon as a "second be form of medicalcare, bat a proper sense of research objectivitywould dictate that it should be experimentally

andand options-.of niediCal care. 1.e.. rrlddttried among people'who have available r urces

upper intome groups, for example. These optionsshould include More traditional forms of medicalcare. -, .

.

,In general, traditional -forms of medical care,

were not disparaged. It 'was stated that self-careresearch should.be conducted in the spirit 4of as-suming that the current medical system delivershigh quality care. It was also stated that the self-

. caret movement cannot be used as a vehicle to Shiftblame to consumers fOlfproblerns in the traditional . Isuishasosof Glad.. DH[ If Pak, int Protratou of lisuesx StErrit

lf 04 NO i % M ) 72- 1021%atIona1 insolutes of Health. Drrimon ofheqlth care delivery system. , . liAllesda Warr-Wad 20014)

.

Other'ethicaN.oncerns ss. ere offered as a muterof recorduAd can probably be gtiteralized tomany forms of sociallreseartiforms of, searchand ethical consideratidns xhich the Departmentof ftealth,cEducation, and Welfare has dealt withfor years.3 For example, it was suggeited that'NCIiISE; support research designs which. ran-domize subject assignment to treatment only afterthe subjects' acceptance has been olitained, Also,research risks should be considered. The risk/benefit ratio of any research project should be 1.0or less, and in cases 'where potential risks are un-rnown, subjects should be so informed. Informedconsent procedures for such research should con.-tam an estimate of risk relative to conventionalmedical care.

Fihally, it was suggested that v.g not construct a.self-care Astern than leads",to exploitation 'ofwomen as practitiooers of self-care.

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Summary of recommendrions'of ,

s -*

;Recommendations for research are addressed to

the health services research and, the behavioral re-communities as well as to the $:ational Gen-

, ter for Health Services Research. In general, therecommended research, involves studies concern-ing health Care providers, copsdmers of healthcare, and the fat-ululation and demonstration ofself-care theory:- -

t The perarpeters'Research is needed on self-care education that is

predominantly comprehensive' in.naturc, and ad-dresses primary care medical tasks. An-emphasison shOrt-term research is suggested. Suctvesearchhould contain. an elemeint of substitution. (see`definition':, section).

Dependent variables for such 'reseirc4Shotild gobeyond merethanges in'consumer knowledge. butshould address changes in, for example; consumerconfidence and attitudes, health care utilizationpatterns, demonstrated health care skills, healthcare costs, hospitalization rates..and morbidity and

1, Comprehensive etucstional content2. Self-care which sobslitutes for pnmary care1.Peperident .ar,ables addressing. !Col example. att.t.ides.

'ferns, mortality, hospitalization rates, and morbidity

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sr

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mortality rats: For redzch supported byNCHSR, special emphasis sho,uld.3.e pkiced on'valid research designs using objective data, reliabledata-gathering instr m nts and meihod;, andproviding a high

2. Consumer-al esearch(a) A nagonal surv0-of'consumers recom-

,,niencred. The surrey is intended to reveal the,current state -of the' population's health be-haV r and attitudes, and to aid in drawingn et about the types of self-care.tasks

e to be un di in demonstrations. Thesurvey-should, at the least, collect data on (I)

:population characteristics, (2) the popula-tion's incidence of health problems andresponses to those problems, and (3)po'pulation's attitudes, perceived needs, andgeneral acceptability regarding self-careactivities.

(b) To supplement the national survey, a review,,of literature on consumer health behavior isrecommended. Special eMphatis shatlid'be

Parameters,9f research

Health Care Review40# *Providers - Literature

A. Provider attitudesand behavior survey

2. Self-care Programsurvey

3.Shaes of health_..que,manpowit.

4...5,4.

.4

,:onfidenoe, c.onsurnei slum. wsis, efficiency of services. ablization pat-

.41414. tarfaieots ofConsumers -1111--=--0,-1. National Consumer

,Survey

..41solate self-carettrtud asks. &

prfifilceel& determinecharitcliffstics of.those

(tfetermine difficulty'levels)

ADernOsInUe1hoss-tasks). ,k

3

De nstrations & valuation1. Orgacized-nealth care

settings

2.-The frilly unit

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ss. ma aged and those needinglong-term care..,,

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4. Rural setting .

5. Youth being socialized (theschool system)

, G. Industrial setting

Ftl

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t4IP

given to..findingif on consumer "coping," bythe National Instieute, of Mental Health, andresearch on'coniumer behavior; from theNational Institutes of Health categorical Os-

. ease programs. -

.

,t3. Health care provider researchr (a) Baseline information' should he° collected-

from existing programs of self-care. Also,provider attitudes toward self-care educationand consumer initiative should be surveyed,as well as the current state_of provider be-havior in ehcouraging,fnd Tostering con-

. sumer initiative and self-care.

(b) Based upon survey findings, literature re-view, and demonstration experience, re.-

iltrisearch on new barb care manpower relatedto self-care programs will probably be indi-cated,such as nianpower needs assessments,training, and field demonstration:

(c) There needs to be experimentation v.- ith newcurricula for undergraduate students in th"ehealth prOfessions. The curricnla should ad-dress consrmeriprovider interaction.

4. Demonstrations(a) Settings;fo; demonstrating self-care practice

or theory should include health .1kritenanceorganizationskid other prepaid'grdup prat-tices, familik practices, multiple specialtyclinics, emergency medical servrees settings(in limited-cases), public schools, chronic careand long-term care settings, youth service or-

. -ganizatiohsand industry. '

(b) Populations for research and demonstra' donsh'ould include youth, especially in the Schoolsetting,'and the elderly7 Outcome variablesfor the latter should emphasize immediateimprovement in the quality of life.

(c),Tlie.,rural setting should be addressedthroifgh demonstratiOn, but not asla solutionto the scarcity of health care...manpower-andservices. The implementation of experimen-tal self- are projects should in no way di-Pninis current efforts to reduce the scarcityof dttional health care services.; , 14 ,

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Appendices

Appendjx,A

"The 'Care` In Self-Care".by George A. Silver: M.D.'

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Abstract 2: This paper presents the view that in spite of all:the discussion and debate surrounding theself-care issue, emphasis must still be placed on the "care" in self-care. There is a responsibility to tare, nomatter what the difficulties.

A startling comparison can be drawn between the pampered position of the clergy in medieval times andthe position of the medical profeision in recent times. Both were considered to be the elite, both theself-appointed hierarc'hies of their time. Howes er, with the a santement of printing and the abandonmentof Latin came those who challenged the prisdeges of the cler . Similarly today, public education andthemedia have served to bnng medical knowledge to vast num , and, now there have arisen 'those whochallenge all or part of the existing medical order. They view medicine as a self:perpetuating bureaucracy,once concerned with alleviating.suffering, now a dehumanized mechanism.

Thus, the self -care movement is now seen as the solution to the problems of the' cutrent Medical order.It is ArtWght to be an economic remedy, a.p-olitical remedy, and even a.social remedy. Perhaps it should notbeviNed as a cure-all, but rather as a social measure to increase cttrreni medical services. There is,therefore, a need for all the dimensions of self-cafe to be fully investigated lb Order for set-care to be arealizable goal. It needs to be completely researched, and its territory minutell mapped.

In a brilliant essay on the role of medicine as anintegral factor in the helping 4rofessions. FrancisPeabody made the point that the -secret of thecare of the patient was caring for the patient."

We are living through very exciting, disturbing,unnerving times in every aspect of our lives: social,political, psychological; and personal. The pres-'sures and demands are such that the best-intentioned and most thoughtful'of us tend to be

. caught up in the wave of competing dogmas andequate belief with effect. In the intensity of that-belief, we may loie sight of our responsibility tocare. I would like this Meeting to hold to a stand-ard of subjective as well as objective concern: at-tention to the "care" as well as to the "self It willbe difficult.

The subject we have come together to discuss,pon drs, and dissect ii'very much in the center ofpopuMr agitation,today. For'some is is the key tocost control, for others the key to equitable dis-tribution or resources, and for some .a crusade.Self-care cutt across conflicting medical opinionsand lay interest trends.

Note the contrapuntal use of "medical? and"lay" in the last sentence. This generation may bethe last one in which the terms "professional" and

Professor of Public Health, Yak University Sehool of bfecktok2 Scusunarurd bylcunac A. Gillts. Natuanal Gent= for Health St-rakes Research.

.

"lay" may be opposed. The historic nature of this .development should not be overlooked, bei.ause insomeways it,epitomizes the reasons for calling thisconferenCe.

It is interesting to note the parallels with the lastyears. of medieval scholarship, when clericalandlay were the oppoiing terms. The clergy had the *'education, sophistication, knowledge, prestige,and power. The clergy was the elite, second only tothe nobility and royalty; and in some places, sec-ond to none. The clergy was the beneficiary of oc-travagantlargesse from the nobility androyalty. Itwas equally the keneficiary of the pittancesscraped together by an impoverished and oppress-ed underclass, ignorant and unlettered, who madeup the mass M mankind. A situation, one mightadd, not too different from that of many of themillions making up the mass of the third andfourth worlds,today.

We cane recall how powerfully privileged thatupper class was in the persistence of the term,."benefit of clergy." If you could read anewrite,*you needn't be tried in ordinary civil courts forcertain crimes, but could lay claim 'to trial inecclesiastical courts. In the civil courts, punish-ments, meted out included a hand chopped'off,.ears cropped, an eye put out, branding, or mostcondign, 'to be 'hanged, drawn and quartered.

15

.a,Ecclesiastical courts dealt more benignly with of-

fenders. You wet-6 educated, a cleric, and would, bedealt with in accord with your dignity and status,hardly ever' corporal punishment; perhaps a, fewextra payers or self-flagellation.

Why aril I elaborating on this themeVBecausemedicine, as a profession; medical practite as anoccupation; medical-care as a specialty servicehave come to be seen as The hefts 0- the meclie%alclergy; and the lay heirs in.ari increasinglypopulist, consumerist- sokiety, are in retolt. Theprivileges and perquisites-of the. elite are indanger, true; but in, addition, yen Much as in'theresults of the 'protestant rebellion; the Reforma-tion, attributes of the clencaLelite will beeliminated alo g with the clergy."'"

In those 'ti es, it was printing that helpedspread the message, that and the growth ofpreaching in the popular tongues. Dropping Latingave everyone a claim to knowledge which wasparticularly important because the protestants had'dispensed with the priest as a special intermediarywith God. Everyone his on priest! The clergywas at unnecessary self-appointed hierarCh%./

The parallel is uncanny Public education, TVand radio. the media-general's' have brought med-ical knowledge to people. Increasingly, tor?* infor-mation has been circulated on the faiJur.esibf themedical priesthood: mistakes. sure. but also theirremedies 4nct positive statements. don't hold fromone year fo the next. And some of their remediesdo more harm than good' Their vtrss humanity

% has been revealed, They aren't a htrL.,,self-sacrificing, patient-rninde0 order They -re just likethe rest of us: some greedy. some lazy: somestupid. some Incompetent. some eviland some allof these. By Apoltb.! There not messengers of thegods. just fellow human beings'

So the new brotherhooditof zealous medical Je-t formers is at work. carrying ctri as anew genera-

ticin of Luthers. Cal%ins. Zwinglis. and Huses. Buton a medical substrate. It is clear:that docNtyrs. rhomedical profession, have deliberately rn%stiQed"'people, hiding the simple knowledge of dgmrsisand therapy behind screens of arcane lfriguageand sophisticated flummery. li's time to return toplain tall Not only that. it's time to get rid of theprofessional cheats altogether- and take over re-sponsibilities ourselves. The most oppressedslaves and serfs in the medieval times. blacks andwomen today lead ill the destruction of the old

challenging the medical profelsional dorm--. nance. This ministry doesn't require 12 `Nil. cif

intense application to only marginally relevanttopicsa few weeks or months will do. immerston','in a mystique is self-defeating, take care cr? mattersyourself.

Some of the clergy join in the unmasking, longuncomfortable with the elaborate rituals of ,cop-cealment and separation from their patients. They

want to bring things_together. Needless to say,they .aren't;e1v,as .i,ekomed in the ranks of theheretics. Ina revolutionary striation. all the oldorder 'must go! As in The French Revolution, then

,-I.,a%oisier %%as executed because as a stealthyfland-owner he was sinner against the people. this re%-olution also ha's no-need of 'scientists. So that's onescenario for de%elo-pment of a self-care program.

Medicine is nine-tenths a professionally per-Oetuated mystery, self-aggrandizement of a sect, abureaacracy like most bureaucracies interestedprimarily in its on survival, not the welfare of itsclientele. Its, original goal may have been to helpsuffering humanity. today its goal is self -preser%ation and that at an increasingly luxuriouslevel.. In the logical conclusion to this analogy. Iwould have to see not only the death of the clergybut atheism and the death of God. In our times,that would mean that sickness and suffering wouldcease to have an social ministration. People wouldfend for themselves.We won't go that far.

The self-care thesis at its most extravagantlymilitant preaches total divorce from professionalconsiderations, disestablishment 61 tha medicalchurch, and elimination of any traditional medicalparticipation in patient care. No matter how small;a consutuencs this extreme position may have, it isImportant to keep it in mind. for a number ofreasons

fn the first place. while it is true that the ()Net-. whelming major-Its of the "self-care- enthusiasts

are moderates. like all of us here, with an appro-priate-perspective. who see this as a necessary andlogical step to the improvement of medical careor.erall. not e%ervo,ne is interested in that end.Scrine see it as an economic remedy --cost sparing.others as a political remedy a substitute for anexpensie national health set-Nice. and still othersas a social remedy statqs levelling throtighmanpower redistribution.. These are unstable al-liances since the confederates hope to attainmutt/all% exclusive goals. With the extreme anti-professionals as a leadership cadre. the health ofthe people Must suffer.

1 hat was my chief reason for initiating this dis-cussion from an historical perspective. I see theneed for self-care as asocial measure to augmenteffective medical services. After all, I am a phy'si-

;clan with experience in medical practice and inmedical care organization. 1 see a need for moreand better knowledge ottheworkings of thehuman body to be more widely disseminated, ofthe need for the nature of disease, its Manifest:a.?nuns. art its prevention, for health promotion ac-mines and simple treatment to be more widelyknown. This knowledge is necessary for e%eryone,not just to save money by avoiding too many ex-pensive contacts with costly professionals, overus-ing machinery and equipment. Not just to avoidproducing added professionals to serge in,under-sftNecl isolated and unpleasant places, or to take

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care of people with whom the professionals areculturally incompatible. or is it that if people get,to know these things you won't need a medical e-tablishment at all. That knowledge is,necessary sothat people can make intelligent Choices, becauseknowledge is the key to freedom of action. Whatdemocracy is in the political arena, that's what in-formed.consent: is itt the medical arena.

In essence, we are here because the NCHSRwants to know what the interfaces are' betweenself-care and medicine;-whIat needs to be studied'and investigated in the professional field that will'makeiself-care a realizable goal. We're looking forresearchable questionsnot polemical ones. Weneed to establish the boundaries, map the terrain,determine the relations between social knowledgeand medical knowledge; the channels from profes-sional to lay understanding: the congruence ofbiomedical and biosocial 'research: the methodol-ogyf learning and the Methodology of teachingthese things.

There is much to learn about the dimensions of .self-care. Trite, there are already pioneers whohave written draniatiddly of the possibilities. Thepioneers have made their reconnaissance: whereshall the next reconnoitering 4e place? Is there atime riow, and a place for pifft programs= Futureplanning?

My own, motto in life has been drawn fromLeonhard Euler, the German mathematician whosal , "Invert and proceed." Or You may prefer'Paid Riesman's formulation. ."Look arall' thestatements which seem true and question 'them]."Either will serve,-e for our deliberations.

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_Appendix B'fSelf- ark: A international Perspective"by Lowell S. Levin 1

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,Abstract 2: Two international meetings held in 075 have focused attention on the self-care mOvement4

and concept. The first was held in Switzerland in March, and' featured some of the theoriesnf Ivanincluaing his thesis on Medicine as an institution of social control. Discussion also centered on the limits ofmedicine, and-a reexamination of the role ixf medicine within the framework of the total social resource inhealth was encouraged. This was accomplished by focusi.zgon the concept of limitatioii with the prpfes-sional health resource.

The second, held in Copenhagen five months later, was the first international symposium on the role ofthe individual in primary health care. The goals of this meeting were to explore the lay re6durce in pri-mary care, to clarify assumptions of role and function, to draw attention to relevant issues surroundiiig theself-care movement, and to identify areas where research is heeded.

The discussions that evolved as a result of this second meeting were divided into three main categoriesIn ale first, "S'eff-care: What is all the shouting about?" the question was reviewed of why self-care hademerged both as a concept and as a movement. Many contributing factors were discussed, but no satisfac-tory explafrAtion found. Also, much variety in the level and expression of the self-care movement wasreflected in the countries represented at this "meeting: In the second, "Issues .Relating to Self-care- its /present and potential," the vanous issues and questions that have arisen with the emergence of th s. self-

gire movement were discussed. 'These issues covered seven different areas: philosophical-political/professional-lay relationships, economic-organizatipnal-adminsitrative, ethical, legal, quality assurance apecost-effectiveness, And policy and procedural ids. In the third and final category, "Research Need) inSelf-care," data available on self-care were shown to be lacking. This led to the suggestion that researth beconcentrated and conducted in the following areas. historical-social studievlinical implications of self-cafe, economic-administrative, and educational research.3

Two international meetings relevant to self-careiwere- held n Europe m- first,1975. The rst, entitled,,, ,,, .*The Limits of Medicine" place in Switzers

,land in March,.1975, and Lured the conceptualshock waves of Ivan Illic whose thesis concerningmedicine as an institution of social control needsno restatement for this group. Illich's reductionistviews fed one participant to ask the obvious queS-.Lion: "If the profession of medicine is to be aban-doned or radically reduced, who pr what shall takeits place?" "Self-care," Illich responded. People,can learn to take care of themselves and theirfamilies. Some left Davos_ feeling traumatized, tta-lated, or "took". 00aeri sensed that the real sig-nificance of the Illi a. prescii$ion and the debateit promulgated was its lack of a substantial rebuttal

' based on (1) dita`documenting the contribution of.:medical care to the. health of society, and on (2)

9 Yak Untearsety &boot o aledscuse. Depaieumem of Liselereaosort ;13Ci hWnealt.

Searnattrizecl bykarate A. Gam nackasal Center for Health &Triers ResearchSor4s1 PA, 7. KO. 2 (1976).

18.0

dat denying the pdtential of self - care :as a--purpose-built alternative to professional medicalcare. In other words, partiFipants who felt theywere witness to a crime against logic were unableto muster Much more than personallsbelief anddiscomfort to back their claim of absurdity On theother hand, proponents of the reductionist theorycould refer to McKeown's analysis of British datawhich show very late and rather modest contribu-tions of medical intervention in' the control ofma,ny of the infectious diseases of-the last severalcenturies. Further, theycould produce some star-tling data which, in fact, demonstrate an alreadyinipressive contribution of self-care and at the'same time some of the hazards of professionalmedical care in terms of clinical as well as social"iatrogenisis.

The contribution of the Swiss conference on thlimits of medicine, it seems to me, was that it fo-cused sharply on the concept of limitation in theeffectiveness and- appropriateness of the profes-sional health resource. In effect, the result was to

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encourage a perspective on the role of medicine inthe context of the total social resource in health,forcing a fresh examination of assumptions uponwhich the social charter of medicine rests.

Five months after the conference, the Joint Cen-ter for Studies of Health Programs (UCLA-University of Copenhagen) convened the firstinternational symposium un the role of the indi-vidual in primary health care. Twenty-nine schol-ars from four European countries, Lfrael, and theUnited States, met in. Copenhagen fora week toexplore the lay resource in primary care, clarifyassumptions of role and function, draw attentionto relevant technical, logistical, economic and so-411 issues, and identify priority research needs.'

Participants included administrators, healthpractitioners, and behavioral scientists. The meet-ing was prepared for and organized in such a wayasi to reduce conceptual and semantic confusion asmitch as possible and to facilitate interdisciplinarycommunication. But there was no doubt that theissue of lay initiatives in primary care drew outstrong personal and professional values which didnot always make consensus possible. Nevertheless,the issues were sharply 'etched as were require-ment's for research on self-care. It is my intentionnow to give you somd feeling for the substance of

. these discussions in highly summarized form.

Self-care: what Is all the shouting about?

The question of why self-care has emerged as asubject of special interest at this time dominated agood portion of early discussions and, indeed, wasnever satisfactorily answered._ There appeared tobe for some the' nagging concern hat self-care wasbeing- promulgated 14 a relatively small but stri-

t dent minority of groups and individuals who wereseeking redress for grievances sustained at thehands of the professional care system: or were insome way denied access to ,dequate professional

'''''Care; or were attempting a-challenge to the socialcantrolpf medicine as part .of a more diffuse polit-ical strategy. Others believed, that interest in self-care Was a reflection of Niger and more profoundaeatdf social discontent with the quality of fifegenerally, e.g., loss of personal control, reactionagainst authority, antitechnology sentiment, etc.. It ,was argued that, perhaps all of the abOve invarious combinations and to varying degrees werepresent in the apparent rise in popular inte1est in

- self -ire. But certainly, it., was noted, we trust takeinto alcqunt the shift in patterns of disease towardchronic illness' which on practical logistical

tgroup , demand incre patient participationin gement and rehabilitation.

equades in the health care system, particu-larly the matters of increased costs and maldis-tribution of persImal resources, may in fact be

1 --

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more immediate causes of an apparent surge ofinterest inself-care. Indeed, some of the solutionsto inequities in professional services could be con-sidered as contributing, unwittingly, to thedemys-tification of the professional resource. Functionalredistribution of the physician's responsibilities,fui example, could have made more apparent theavailability of medical technology through rela-tively modest educational investments. ProfessOrMaurice BacCett of the University of Nottinghamstated his View that self -care was the logicatexten-sion of the medical auxiliary. And, of course,greater understanding on they role of life-style indisease prevention, with its concomitant emphasis'un indiyi al decision-making and intervention;are k st e concepts inithe consti-uct,of holisticand pros ve medicine.

It was ear that there is a wide variation in boththe level Ind expression of the so-called self-caremoveme t in the countries represented at theCopellha en symposium. The United Stases, andto a e6 derably lesser extent, Britain, appearedat more r less one end of the continuum, with theScandi yian countries at the opposite end. Thisfact led uite naturally to speculation that interestin self re as an accelerated resource may bemore nked to the nature of the available healthcare oganization and medical economics than toattribtes of disease patterns or demand for moreperso control over technology or authority. Theapparent level of self-care practice extant wasviewed as comparable among the six countries. In-deed, a recent study reported by Pederson- ofDenmark found that nearly 90 percent of all casesreported to a general practitioner had been rel-evantly self-treated prior to the medical contact.Fry reported on the Elliott-Binns study (1973) asshowing that some attempts at 'elf-care and ad-vice from others had been carried out by mowthan 95 percent of patients coming to see him.-And on the basis of other British surveys, Fry con-fdudes that only 20.percent of all symptom experi-ences result in a medical contact.

13 ut it was clar that the Itatter of self-care as aconcept, as a dikrete component in ,the health caredelivery system, as a focal interest in society and inthe Professions, was, with the exception of Britain,at a relativefi low order of perceptio Indeedsome of the European participants seeme some.,

what indifferent (at least initially) to the Illy pre-scription and rather surprised at the very livelyinterest -tharbAtneFican colleagues displayed inself-care. However, when self-care was defined interms of its functional potential as supplementary,slibstitutionary, and additive to professional serv-ices, Ole European participants were certainlyheard from! On the whole, they. appeared to beless interested in the emotive issues surroundingself - care,' e.g., self-care as part of a consumermovemenftind as a factor of deprofessiorialization,demystification,,and dependency control, and

more interested in the efficacyof self-care in moreclassical terms of health. Outcomes.

i-coin the standpoint. of a European' perspectiveon: self-care, I.think the Copenhagen symposiumOffers a useful reference point for establishing a.broad agenda of &ties and research challengesless parochially geared to the U.S. experience.There-is, however, good reason to believe that theU.S. and Britain very likely ibe the source ofimmediate international research initiatives inself-care, given their present levels of popular andprofessional interest;. theoretical formulations,fragmemary but suggectiye research, and already.on-the-ground demonstrations of purposeful self-care education. There was clearly an interest onthe part of our European colleagues to cooperatein international research on self-care and a pleathat immediate and top priority be given to estab-lishing an international scheme for the ckstribution

_of self-care materials, conceptual, research, anddemonstration. The joinj Center for Studies ofHealth Programs (Copenhagen) has agreed toundertake this responsibility. John Williamson atGuy's Hospital School of Medicine (London) hassince suggested a taxonomy and classification for-mat for Ilse by the. joint Center to ensure im-proved communication across cultures. A draft ofthe classification system apparently is noit beingcirculated for review and crment.

I do rot want to leave this discussion of Europe'sInterest in self-care without emphasizing that thereare at least three-academic centersal6f healthcareresearch which have expressed str.kig interest in'self-car. e4The Unkersity t Copenhagen Instituteof SociAMedicine (Joint Center). The Universityof Nottingham, Department of ConfmunityMedicines and Guy's Hospital Medical School.Depaytrnent of General Practice. In addition, thereis at least one informed group of scholars andmedical practitioners in Britain that has lookedthoughtfully at self-care practice and potential(chaired by Dr. John Fry, a general 'practitionerand member of the British Medical Council)., Andmore recently. I understand that Professor Mar-garet Stacey's group at Essex also is undertakingwork on self-care. The point is that there are es-tablished anchor points ire' Europe for couperatk'einternational research.

Issues relating to self-care:its present and potential

It is difficult to present the issues raised in any-thing more than a cursory manner. -My hope isthat I can transmit the range of these issues. andthe thrust of their underlying concerns. And al-though little concens ts. was achieved, and the in-fluence of the Amerlaan participants was signifi-

. cant, several issues received sustained and ratheruniversal interest. They can be assembled in thefollowing categories:

(1) Philosophical-political issues. Recognizingthe popular base of self-care, is it possible that theintegrity of its contribution may be compromisedthrough a new erstwhile partnership with the pro-fesional.sector? The threat of professional donii-nance is at issue here. Further, with increases inlay technical competence in primary medical care,cin one predict the emergence of a skill hierarchwhich could convert the lay(s\resource into a newprofessional category?

The acceleration of self-cart) competence amonglaypersons could result infundamental-challerigesto the perceived efficacy of the professional healthcare system thereby causing a weakening of publicsupport for expansion or improvement of the sys-tem. Are we prepared to accept this eventualityand acknowledge the potenOal social benefits?

Will increased self-care competence diminish orenhance public participation in concerted social acT:our) to achieve individual and community protec-tion? Can the concept of self-care be cast in termssufficiently broad to include the political skills ofconsumerism without politicizing self-care to thepoint of jeopardizing its universality?

(2) Professional-lay relationship issues. Selfcare is a concept with deep roots in the populistvalues of self-control and self-determinism. Its de-yelopmenk surely will'.- result in demystifying pro-fessional functions and may cause a "re-writing" ofmedicine's social charter. What are the implica-tions of this with regard to currently assumed "es-sential" functions of medicine ins a Lis legitimiza-tion of.illness and the provision of patient support,(depe,ndency) th9ough transfer of responsibility(faith in medicine's 16ystique)?

Given that self-care is a civil right of laypersonswith relatively.few de jurif const?aints; and giventhat there is a continuatibn of lay_bnierest in ex-panding self-care: what are the criteria whichmight-define the effective limits of self-care and itscorollary. the effective limits of professional medi-cal care?

A selftare compe tent population by definitionwould influence more than Abe re-distribution ofLay-professional tea-Fri-4.a! functioiks. We can alsoanticipate lay impact on many pie..:iously `unchal-lenged definitions of nnrmal, tolerable, prevent-able. curable, and ethical. What are the possibleimplications for the medical education of the pub-lic and the public education of medicine?

(3) Economic, organizational, administrative is-sues. One could theorize that a self-care compe-tent society would impact heavily on medical-economic monopolies. Biit it is also-reasonable torise the issue of how the economic benefits wouldIA re-distributed pi-, indeed, contribute furOiereconomic benefit-14o certain cpponents of themedical-industriql-complex.

Self -care as it ei,al.sts today is organized aroundtr4ditional family and cultul-s6cial values It is

indigenous and very likely Adore acquired than

20 /

15

16

cognative. This has been the source of its integrityand durability: At the same time, family structureand patterns of social organization are in rapidflux. What are,the implications of these trends furself-care development?

A key administrative issue was raised with re-gard to incentives`to "bribe" the health and educadOnal systems toward postures and programs moreresponsive to self-care development. There maywell have to be leverage available to encouragepromotion, of self-care practicesgiven the suspi-cion that proof of better outcomes may nut be suf-ficient in and of itself.

(4) Ethical issues. Many of the ethical issuessurrounding, the concept of self-care are con-sequent to its primary effect. the sharing of powerthrough the redistribution of technical skills andthe strengthening of lay initiatives in decision-making. The issues were expressed as concerns.What about damage? The doctors get away ,withmurderbut can the family? What are the risks offalse positives and false negatives? What are therisks of potentiation of medicines and what are therisks of unnecessary misery? (One device not avail-able in self-care is malpractice insurance!) Howmuch avoidable damage is society prepared totiade off-against the health, social, and economicbenefits of self-care?

Then there was the concern for "imposing"self-care on society as a whole. Perhaps there arethose who 'prefer to remain passive,and depend-ent. Maybe self-care should be more specificallygeared to high risk groups (including inappro-priate over-users of professional services)..

On the other side of the coin is the question ofinduced patient dependency and the ethics*of de-l:Ong patients the oppartun-ity for achievinggreater self- control. This includes the matter ofthe ethical obligation to infagn patients of theirdiagnosis, treatment options, and prognosis and to02i.le the medical record withThe patient as a civilright as well as a sound medical practice. What, ineffect, are the justifiable grounds fur not maximiz-ing patient self - control and how can society assurethat their Criteria of access to information arebeing applied? Is the level of patient self-carecompetence a factor in the control of clinical and,social iatrogenisis?

(5) Legal issues: Self-care is by and large unac-knowledged in the legal literature. Statutes covertill practice of medicine, surgery, nursing, den.tisay,.pharmacy, etc., from the standpoint of theperformance of.those acts fur compensation, gainor reward, received or expected. This appeared tobe the case for the countries, represented at theCopenhagen symposium. But there are, of course,a good number of de facto prohibitions which, alihaugh they do not possess the ,force of lawnevertheless may impact on the public's interestand willingness to undertake to learn and applycertain procedures, One can anticipate, howeve

the possibility of court test (as occurred in Califor-nia recently re a woman charged with the medici-nal application of Yogurt to, another woman).Those who engage in self-care education must bemade cognizant of this potential, however margi-nal it might be. The more immediate and substan-tial issue is the possibility of professionals assum-ing de June constraints causing them to limit theireducational efforts with-lawersons to health pro-cedures. hich do not cross over into areas of tradi-tional medical functions.

(6) Quality assurance, and cost effectiveness.Self-care as it is now practiced is subject to empiri-cal testing, albeit the criteria of effect may not al-v.ayssbe in agreement with professional criteria.Views of the efficacy of self-care practices now runthe gamut trom charges of 'rampant empiricism,"dangerous and ineffectual, to the view that theyare overwhelmingly harmless, usually appropriateand, indeed, are what makes it possible to save anyhealth care system from being swamped. The re-search of Poul Pederten of Denmark and AnnCartwright and John Fry of Britain support thelatter view. Most of the illness most commonlyexperienced is self-limiting and rare)), lifethreatening.

However, purposeful self-care education is pro-posed that goes considerably beyond the folk sys-tem and, as a consequence, has an 9bligation totest the efficacy and safety of primary mediCalprocedures to be selVadministered, withoutfessional supervision, and without an establishedorganizational framework for peer review andcontinuing education. Like other aspects of publiceducation, once the skills are introduced they be-come, by definition, thrnsublic domain. Biohealth rcare skillsunlike reading skills, deaand periodicreview for validity, improvement through newtechnology, and for some procedures, frequentuse to maintain the skill. Also, situations change,thereby limiting the use of protocols and al-gorithms to those not requiring sophisticatedsymptoms analysis beyond the capability of theself-care educated. A point also was emphasized bya British investigator that the evaluation of-self-care must take into account psychological, social,and philosophical variables which are unique out-comes of self-care (in contrast to professional med-ical care outcomes).

The Copenhagen symposium did not go beyondraising the issue of quality Control in self-care edu-cation. There were no solutions offered. Oh theother hand, several discussants took the view thatwe can at least make sure that the primary caretechniques suggested for transfer to the lay do-main meet, in theniselves, a standard of efficacy. Itwas noted that many established primary care pro-cedures used by professionals probably would failthe test of efficacy regardless of who applies them!

Finally, several symposium participants agreedwith the view that the issue of quality control and

cost effectiveney in self-care,should not be limitedto clinical trials or outcomes studies, but should in-dude large measures of effect in terms of socialchange, impact on the prbfessional care system,and net economic 'effects.

(7) Policy and procedural issues. Scholarly andprofessional attention to the potential of self-careis at a very early stage. Our Euorpean colleaOesagreed that the natural forces of social change andthe requirements of chronic disease managementwill most likely continue to place self-care in astrategic position. Purposeful development ofself-care as a recognized component in'the caresystem will require policy makers, administrators,behavioral scientists, and medical practitioners tore-think some of the basic assumptions upon which

'our present approach to health development rests.Conferences and seminars on self-care are usefulnow to stimulate interest, but the crucial need' inthe immediate future is a data base, preferably onan international scale. Secondlr, we must makesome decisions with regard to research priorities,again with technologies amendable to internationalcomparisons.

This will mean challenging national researchpolicies in health care to shift, a substantial proportion of their research and demonstration supportaway from the present nearly exclusive emphasison manipulations of the professional sector, e.g.,

' professio,nal manpower incentives, organizationalreform, professional education. practice mod-alities, etc., to the lay 'resource, e.g., determinationof self-care competeoc-r, levels, self-care needs as-sessments, development strategies, etc. No coneshould underestimate the.difficulties of such a pol-icy shift, given ihe awesome professional con-sutuanoes supporting the present arrangement.Consumer grqups interesteTine F.care-ar l'aT611F-no match for the professional lobby.

Research needs In self-careA. Preface.

From theoutset of the Copenhagen discussions,it was clear that,there were relatively little data onself-care practice, the needs it addresses or prob-lems it may cause, or the nature of its interactionwith social, political, technical, and organizationalfactors. All that could be established was that self-care was ubiguitous among cultures, that its spe-cific effects were unclear, and- that efforts tostrengthen primary health care require that we ac-count for all components in the delivery system,including ihe contribution of the individual andfamily'. It was agreed that studies of the lay re-spurce in primary care an almost totally ne-glected area of research an rarely considered inhealth planning.

A commitment to self-care research should en-sure that it is free of prejudgrnentilThis cautionreflected the Copenhagen participants' awareness

that self-care research and demonstration must'address such sensitive issues as efficaLr of existingprimary care technology, substitutionary potentialsof self-care, la!, skills in conirdlling the healthtransaction, and self-care implications for reduc-ing iatrogenic effects.

A major block to self-care researchor a factorwhich may effeCt its ultimate usefulness inplanning'-cAld be the lack of a theoreticalframework. One app.roach to this may be toexamine self-care within the classical categories ofhealth maintenance behavior, illness behavior, sickrole behavior (prior to contact with professionalhealth care), sick role behavior (post medical carewntact), rehabilitation behavior, and chronic carebehavior. This could at least provide a descriptivedisplay in which we could identify gaps and incon-gruities in theory and research relevant to self-care. Further, and perhaps most important, suchan analysis mar reveal assumptive biases which r'e-suit in failures to test the full implications of be-havior's in terms of positive benefits (examples.dela) and compliance).

Before proceeding to specific research recom-mendations, one other issue raised in Copenhlgenmust be mentioned. tt was believed by several atthe symposium that self-care research should beapprOdched on a broad front. Whit is needed is aresearch strategy which recognizes that the natureof self -care behavior demands.observations at sev:eral levels involving case analyses, critical inci-dents. and self-qbservationias well -as survey re-search and large population studies.

Lar involvement in self-care research was givenspecial attention. Self-care, by definition, lies be-yond the purview of the professional componentof the health care system. As such Self-care be-

tav iorg have not been dermal; cod-that-0r Lri ra

of efficacy determined.' Self -care practices exist forreasons and purposes assumed but not tested; thedemand formodifications.or addition's to self-careare not necessarily predictable on the basis of pro-fessional judgment of needs or appropriateness.Criteria of use, effectiveness, and demand maynot, in effect, conform to usual professionalcalitkationsin all or even most respects, It isnecessary, therefore, to pursue a research strategyinvolving lay contributions to self-care theorybuilding (including rationale and benefits), iden-tiaation of 'variables affecting,self-care practices,framing of 'hypotheses, and setting of outcomecriteria,.

B. Specific research recommendationsI. Htststrual-social studies

Description and specification of the present var-ieties Of self-care in their historical development,as well as in their specific current manifestations,is required as the first phase in descriptive re-search. This would include the impact of culture,

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pollitical and religious ideologies; populak beliefsAsand attitudes on health in general and self-c.afe ishealth in particular. Historical and social perspec-dyes are likewise essential to an informed view .ofcurrent manifestations of self-care.. A:related question of historical and social importance is the role of the interest groups. Who ispromoung self-care and why? Is it a -social move-ment"? This would call for a broad cross nationalstudy of social forces supporting and opposing thepresent thrusts toward self-care, a specification oftheir intensity and significance in plitic.al-socialterms, their probable impacts upon healthsystemsand professionals, points of conflict, etc. Suchstudy also' must seek to evaluate the contributionsof political and economic factors, morbidity pat-terns, and attitudinal factors (anti autfiority sentiments, etc.) to self-care.

2. Clinical implications of'self-care.These studies would haye to do with the issues

of the efficacy and appropriateness of self-drepractices. We know something about the intensityof self-care, little about its quality. Further, the in-.troduction-of new self-care techniques can andshould be subject to clinical trial as in the case ofother health practice innovations;-recognizing thespecial problems noted earlier. This still leavesopen the issue of selecting new self-care options,i.e., the issue of appropriateness, whit criteriawould pertain and how are they to be arrived at.(Hopefully our discussions here will focus on thismatter.)

3. Economic, admiiustrative studies

Some specific reconimendations emerged.What are the present costs of self-care, which

..papalatida _gnu ps, hem r them_a_atLw.laira...2abenefit from them? (input - output mocyt1)

Which areas and processes of self-care can bedistinguished on the basis of outcomes in terms ofhealth impacts, net costs and democratic values?(outcome"acconnting matt-ices)

What incentive devices can be designed -to.support efforts to increase self-tare activitiesjudged effeitive and prudent.? (policy explorationresearch)

Is there a relationship between the charac-teristics df the primary health care delivery system

/ and the level of involvement of the individual inself -ire? (in terms of payment system: multipleversus single source system, fee-or-free basis, soloor team primary care, level of work load of prat-

. titioner, extent of professional autonomy, integra-:tion of social semi intd piimary health care serv-ices. (These would studies of behaviornotoutcomes)

4. Educational- research

Self-gre education research and developmentwas viewed by the symposium participants as h,v-

ing two distinct thrusts. The first was work on test-ing techniques of. disease.- or situation-specific

,self-care interventions. These would include vari-ousdev ices to iniprose lay capability in preventiveprocedures (monitoring), minor therapeutic inter-ventions (what to do until the doctor comes), androutine maintenance skills (insulin taking). Heretht design and testing of protocols, algorithms,and patient instruction materills..would be under-taken. A second thrust was thit of-designing, im-plementing, and evaluating long range, self-careeducation programs where objectives could in-clude Allis' in diagnosis and decision-making and avariety of medical care interventio4,) includingthose that are frankly substitutionari di profesc..sional functions. This cottld take the form of a se-quential educational program for sthoid-thildreover a 10 to 12' year period-with outcomes 6bServed over an- additional 10 to 15 years. A lon-gitudinal design would allow testing a range ofoutcomes of special relevance to the concept ofself-care, e.g., self -care skill maintenance levels,.personal and social health decision- making be-havior, use of professional services, control of clin-ical and social iatrogenesis, and medication behavfor, as examples.

Finally, there is the important matter of profes-sional education with regard to self-care. Unfortu-nately there was not sufficient opportunity for thesymposium participants to do much more thanexpress their concern that education or healthprofessionals must be undertaken (at an earlystage) to let them understand their advisory role inself-care. It might be interesting Co experin ewith edublional modalities which give the liprofessional stude,nt an opportunity to learn Himlaypersons regarding self-care practices and their

rof s ional

which accounts for the overwhelming proportionof continuous health care provided on a day to daybasis.

I I

cart in health is truly supplementary to self-care

In closing: Fry o- ffers an important caveat- re-gardieg self-care research:

Self-care cannot be studied in isdlition..Thewhole process of primary care, that involves ,

self-care and first contact medical care, ... must'be studied in .order that' the roles of the publicand the medical, nursing and sociat-work profes-sions can ,be best defined and applied.°

John Fry. *Selbcarc Ws Place is the Total Health Care System" report by asSilldependeftworth) party (September. 1973).

2 3

Appendix C"Health Beliefs of the 'U.S. Population:Implications of Self-eare"1by Gietchen V. Flemingand Ronald Andersen, Ph.D.2

Summary 3: Fleming and Andersen address the potential for the self-care movemer,Ws'growth in theUnited States by examining the available literature and -determining wheither it supports assumptionswhich are made by the movement. Such assumptions are. that medical care should not be given preemi-nence in-our society, that people are not getting that they want-from the existing medical care system, thatconsumer independence is a growing value, and that some primary care tasks can and should be under-taken by consumers.

The authors, review existing research to deterihine the extent to which the assuraptiorig of the movementmight be supported by beliefs and attitudes of the population. The cited survey findings address, e g , thevalue of health to Americans. , satisfaction with medical services, the value of individual independence onhealth matters, and its complement, consumer dependence upon- the medical model; and the level ofhealth knowledge of the U.S. population.

In. gerieralr the authors conclude that the potential for successful growth of the movement has shownsome ,improvement in recent years. The trends., they say, hint thacpeople value medicine and are notparticularly disappointed by their own doctors, but there is some growth in consumer self-confidenceregarding health matters, anda growing criticism of professional motivation and the quality of health careFurther, the irooveme.nt stresses reform instead of reerAution, so it could be considered a candidate forsu , . But, unfortunately, those who would benefit most could be the least-likely followeri of the move-men as preliminary studies indicate those who would be interested are young, white, subuiban, educated,and -rk.ncially secure.

. The authors proscribe needed additional research, and offer cateats regarding the findings they citeFor example, an assumption of the authors is that expressed dissatisfaction with medical services indicatesthe motivation to seek alternative forms of care. Also, it is possible that expressed scepticism Coward rnedi-airwvitertntryjusr-i-nrlicate-2-4-atailisnr--"-toward health.

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4

s Porprarser,Series, Center for Health 'Administration Studies. 1,712rieritVi ofChicago (64 pp.).s Center for Health Adzossostrauess Stidses. Lniverstm of Chlt-Sr2 Sneassarked by John D. Galliecluo, Moon/ Center for Heakb Serrates Re-mar&

r a

th017. ran paper ass published /37 the Center for Health Administration&odors. University of Chicago. Peripscsass Setts. No Mir &cause of its omelet

nvailabdity. k is omitted bete.) 4W

ta,

'4 4

Appendix 13

'Fleaearckand Demonstration Issues inSeff-Care: Measuring the Decline ofMedic ocentrism

<13-y Lawrence W. Green, Dr.P.H.,**Stanley 'H. Werlin, M.B.A.,***Helen 'H. Schauffler, /3..7k.***and Charles-H. Avery, M.D.***

Summary: The origins of the current emergence of consurnet health education in self-care is a reflectionof two converging trends. the increased popularity of pfient;educ,ation programs,.and the growingawareness ori the part of consumers that they are indeed capable of rational, sophisticatedfactois as the movement toward consumer Participation in government programs and cominunity de-velopment, the self-directed beha,idr and behavior modification movement, the evolution of nursingtheory and practice frOm "helping the helpless- toward facilitating self-care, and the evolution of grOupdynamics and self-help groups have all contributed to this trend. The medical self-care programs inspiredby these social currents include such diverse subject matter as self-throat culture, arthritis, gynecologicalpreventitin, hypertension, and other condition specific topics, as well as more comprehensive self -careprograms covering a wide span of activities: Must of these projects have not existed for sufficient time tohave conducted and reported an evaluation of their impact on participants behaviiir and health status.Such evaluations are dearly needed before medical self-care programs, are encouraged to proliferate asmany other -unproveril social programs have. Where possible, such evaluations should be designed on aprospective basis and built into the educational program, rather than imposed retrospectively. This canavoid difficulties with inadequate or unavailable baseline data, inability to identify control and experinien-tal groups, and non-comparable or non-uniform data across study groups.

The relatively unevaluated field of medical self-care programs suggests a number of important researchand demonstration issues. These include measurements of attitudinal change. behavioral °Income, man-power implications, cot.bene fit trade-offs, the technical limits of self-care, the applicability of self-careeducation to various population groups, and the utility of consumer algorithms. A raajor,need in the fieldis the development of standardized measures of program input and output to facilitate comparison ofresults across studies. A federal program of replicative studies on these research and demonstration issues.would offer the possibility of providing both substantive knowledge gains in the self-Lire field and resultspotentially generalizable to the larger field of health education'pfogram evaluation.

Introductionlvfedicocentricity, like ethno and egocentricity,takes many forms. The allied health manpowermovemern'has succeeded in eroding one form, thevirtual monopoly of diagnostic functions and theconcentration of therapeutic functions in thehands of the physician. Once. some of these func'tions, had been wrested from the medical profes-sion the veil lifted from a variety of medical pro-cedures. It was found that these could be spelledout in fail-safe protocols for the training of physi.

1-Sepported by Parchase Order No/n4.195 from the Nattonal Center for HeathSemmes leserreh as pmt of work performed soda Comma HEW-100-75-00112from the Office of the Assistant Secretary fOr Plmetts.g and Ersissoorafenkh.DHEW.**Asistatitpans for Costissing EdoesokSt. Had. DT,444b of Heskit Edam-dew Assodsse Professor is Departments of Heath Admisistratios. Perpn13.dos Dyssmia, sad Debniorsi Sdesots, of140efs, sod Polak Heath.jams Hopkins Usirersity. Eadmore.

Heath Care Droop. Aram D. Loa*. lac, tgmbc c, Hanutsoseus

clans` assistants, nurse practitioners and even am-bulance drivers.The next logical step,in thedecline of medicocentrism proceeded rapidlythereafter. it soon became much easier to transfermore of these functions to the conikumer or patienthimself. This has led toa sudden expansion in re-cent years of a class of health education activitiesnow called self-car e_prograras. The conceptualbasis of these consumer self-care programs did notin fact originate in the medical care system itself.Rathir, as this analysis will show, self-care con-cepts and related forms of consumer pa,rticipationin assessing and solving problems has long been aniniegral part of the research and practice in manyof the other helping professions.

Purpose and scopeThis paper will examine sOme of the problems

and prospects for demonstration and evaluation of

5 4

tt,

... .. .

self-care in medicine and health. For the purposesof thisper, self-care will bedefined as consumerperformance of activities traditionally erformedby providers:Recognizing the relative paucity ofexperience with patient activation * in medicine,many,of the propositions developed here will drawupon more extensive. but parairci experience withactivated consumers or clients in education, be;havioral and clinical psychology, public health,marketing, social work,(community developmentand similar fields. .

vagtlikt paper is alsd based. on data collected eitherby site visit or through documents and telephoneinterviews with fifteen self-case programs' in which

was as defined as the performance by con-sumers of action's traditionally carried out byhe'alth care providers. The self-care programs sur-veyed included programs in which consumers werePerforming on their own behalf what proft:ssionalshad previously-done `far them. A sixteenth pro-&Pam will be described in more detail a0a casestudy. The range of activities fdund in -the sixteen'programs studied is described belov.4

Six of the sixteen programs can be described ascompreherg' iz's,e self-care progratns. the RestonGeorgetown (Virginia) program: RegionalSelf-help program sponsored by mountainRegional Medical Program (Salt Lake City), theNorth Carolina Memorial Hospital Progiam(Chapel Hill), the Peter Bent Bitgham HospitalProgram (Boston), the University of ArizonaSelf-provider Project, and the Georgetown Acti-vated Patient program. Seven programs addressedchronic diseases: The Diabetes Education tenter(MinnesOta). Central New York RMP (Diabetesprogrdlin and Holine Dialysis program), Group

'Health 'Cooperative of Putet Sound (twopiograrns--diabetes apd hypertention), the Inter-mountain RMPs arthritis prcIthram, and the JohnsHopkins asthma project. One program, the 'Fee,standing Vt'otnen's,Health Center in Boston. ad-

-dressed preventive care in gynecology.Finally, two other programs aredescribed: the

Home Throat culture program of the ColumbiaMedical Mem IniMaryland and the 14nroe County

. (New Yorkr-gonocrhea self-screening program.,, Most programs rely on small group qr one-to-one

educational contact; the North Carolina MemorialHospital relies primarily op programmedinstruction. ,

Conceptual-origins bf setf-careWith the eiterglikt array of_cun-ent activity in

medical self-care, much of it without precedent inthe medical literature per se, it is imperative thatthe research experience with self -help program-ming in other spheres of human service be re-

'VeiiikkatPions has emerged m sbe arssamokTp d the bestsh odsmsoos raid a,

*cent year so ludic *e alumnae= of papa= isrsolraent to persosal healthclue through seicksag of mil-care sills (physical) sod pan:spies ai prestamsa 2

'-'viewed. Such a review' should 'help to .a oid the.

.repetition of costly historical errors and t suggesi,hypotheses and methodologies to be used in,evaluating self-care in the medical sphere.

The consumer participation movement: Thissection will not attempt to review the history of the ,

voluntary health and welfare movement, or thecommunity development movement. Both of theseare pertinent to the self-care movement but bothhave been extensively reviewed in the past andsummarized in recent reviewe.,of community par-dupation in health services.' 15 The two aspects ofthese movements that are most germane to theemerging self-care, movement and in need ofcloser inspection here are. (1) the attempts to'measure citizen.,participatiotl and its effects onhealth care, and (2) the- effects of legislating re-quirements for citizen participation.

Silver has already noted. the 'need for "-evidence'of the valueor lack of it--in consumer pardciparc, "'suon and control?! 14 A few methodologil ldvances.and empirical studies were developing at the tirne--,of his review and are now available for adaptation.2to self care evaluation. '64' The case,study methodwas predominant, but recent developirs combin-ing content analysis of discussions aUineetings ofconsumers and providers with formal interviews .have offered ways of assessing consumer sophistica-uon vis-a-vis the health care system' .1S211841 This ap;,_proach to measuring consumer autoncfmy might beextended to include affective, as well as cognitive,dimensions. If the concept of the "activated pa-cent,'. for example, inchicles the temerity of the pa-uert in questioning his physician, then a measure of -

assertiveness 22 would be a legitimate criteria of.success in self-care programs.

Silver also noted that the problem of evaluationin consumer particip on would` be as much a con-ceptual problem .'4" technical one. 14 Some as-rssments of e sumer participation within theframework of ealefi education have provided adegree of c ceptual clarification pertinent to

.evaluation of self-care 'programs. 2.26 Wang et a/,for example, have delineated program cOimpo-nents, intermediate objectives and long-term ob-jectives in a program designed to involve inner cityyouth .more actively i,the extended activities ofthe community pediatric center-2f' Galiher, et al,have attepipied to define consumerisin in relationto health3nkl-to delineate various levels at whichconsumers canarticipate in health decision-mak-ing, 25 And Green has offered a variety of hypoth-eses-on-measurable benefits of "constructive con-sumerism." in health ca systems,2't 27

The second aspect of e consumer participationmovement which must on ern those who would"expect consumers to embrace the self -care -

ment is the legal aspect.,The ConimunityActionPrograms (CAP) established under Title H of theEconomic Opportunity Act of 1964 moved con -

1

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sumer participation from a matier, of voluntary ac.-.don to a matter of public policy. Community Ac-tion was suddenly defined, in legal terms whichcarriedboth opportunities and new obligations foe

4-t, the par.28"Maximum feasible participation" wasfurther legislated in P.L. 89-749 in 1965 (authoriz-ing the establishment of Regional:Medical Pro-grams) and in the Model Cities Demonstration Actof 1966

For all of the good intentions behind the con-.sumer participation movement, its legislatecrim-plementation Was misunderstood or mistrusted bymany. professionals and consumers. The"Maximum Feasible Misunderstandinf" created bythe law. is summarized by Mainihan.

22.. :In making its way through the maze of theExecutitre Office Building it had acquired amanagerial gloss thatwhile never fully, or evenpartially, intended by. its original sponsOrsnonetheless proved decisive in its adoption bythe mandarins of the Budget 'Bureau Commu-

, nity action was originally seen as a means ofshaping unorganized and even disorganized tityfdwellers into a coherent and self-consciousgroup, if necessary by techniques of protest andopposition to established authority Somehow,however, the higher civil service came to see it asa means,for coordinating at the community !eelthe-array of conflicting and overlapping de-partmental programs that proceeded .fromWashington .. (p. 11) 31

The co-optation of consumer participants inmanagerial functions undermined the intent of thelegislation and left many volunteer participantsfeeling exploited and suspicious of governmentalpurposes: If the self-care movement becomes -simi-larly enmeshed in governmental relations withhealth care providers and agencies, it is likely totake a different form, or at least a different flavorfor thesensumer, than iknow takes in the pro-grams under study today. This leads us to cautionagainst extrapolating from evaluations of currentself-Care activities to results that could be expectedgenerally under a universgprogram sponsored bythe government. This cation is not merely astandard caveat on generalizability, but has special

-4\kimeaning in relation to activities in which voluntaryparticipation of consumers becomes qualitatively adifferent variable when it ,is reqUired by law.

The lesson from governmental implementatiobof "maximum feasible participation" laws ,Is notnecessarilythat governmental support should notbe offered to selficare programs, but it should beoffered with carefully designed safeguards for thevoluntary- character of the programs. ,

Self - directed behavior and behavior modifica-Ilion: Whereas the citizen participation movementin healthcare is a pervasive but virtually un.evaluate precedent for self-care, the behaviormodification movement is a limited but rigorously

*

evaluated precedent. The early applications ofhellia,;iot modification techniques to health'habitswere tightly controlled experiments in which thesubjects were voluntary participants btu the re-wards were designed and allotted by the experi-menter. Increasingly, operant rewards have beendesigned for-control by the subject (e.g..self-monitoring charts), to the point that the teclinol-ogyof behavior modification has been transferred'to the lay public in the form of "self-con 1, "'

"self- determination, "' and "biofeedba-

manuals. 32.34 'The training pfeprdessionals to use behavior. .

modification techniques increasinglythe appUi-;"gion of reinforcers that patients, clientsor sublicisn use in their own home enyiron:.

.anent. 35 The early work of Kanfer and associateson the conclikiOning of self-reinforcing responses,based on; an analogue to selt-cbnfidente train-rg, 36' 37 led to the clinical teaching of techniques,

rfo self-regulation (called "insligation., ther--apy").38,39 This--and related techniques applyin_gprinciples of operant conditioning were, sub-sequently developed to enable indiiiduals to.employ them at hoibe with a minimum of profes-sional supervision. The most notable applicationshave been with eating behavicir and obesitycontra 40-44 and smoking cessation: 5'4/

Nursing leadership,; n seif;care: The:discrepan-cies between patiWnt and physician expectations

.under traditional systems of Medical care suggesttwo. other precedents for the Self-care movement

hli deserves at least acknowledgertrent athorough review. One is the longterm but fltlyformalized shift in nursing theory'ind practiceaway from the Nightingale model of helping thehelpl t6 the current themes of self-care as for-malize

-,NIursing Development Conference

Group. 48 transition spans a century and isgraphically i trated by the series of charts re-prochiced Below, contrasting the definitions andconcepts of nursing from Nightingale" throughShaw, 50 Harmer, " Frederick and Northam, 52Henderson,53 and Orem.54

Another departure from, the physiCiais- as thepoint of reference in self-care is the literature pnself -help groups. ,

Group dynamics ankSeltbelp groupp: Ratherthan relying on health pidfessionals fir supportand guidance in matters of prevention, treatmentand rehabilitation, many consumers_ dnd patientshave found greater credibility or conipatabilitywith others who shared the problem or concernTlig early -precedents for 'ibis aspect of the. self -c, movement provide an instructivedocumenta-Iron of the efficacy of self-care.

Commonality of physical condition "ini healthproblems tends to give groups a cohesiven*ss if noran initial attractiveness." Such grouping has beenfound effective in ,educational -approaches to'changing health behavior-among alcoholics,'"

2?1

ALT

,

).41.s.,

obese patiehts').7 neighbors meeting on accidentprevention, 58 ambulatory hypertensive patients, 59parents of children with rheumatic fever, 60 ulcerpatie' nts, 81 adult cardiacs, 82 parents in child healthconferences," and most frequently, diabetics."The effectiveness of bringing together individUalswho share common health problems appears to bebased not only in the tendency to trust and con-form to the judgment of others who have the sameKoblem (which was experimentally demonstratedamong orthopedically handicapped subjects), 6'but also in the quality of pertinent and under-standable discussiOn and mutual reinforcementthat occurs amongyarticipants in such groups. Ifsuch groups of patients can also be organized withsome socioeconomic `horhogerieity, the ,discussionof solutions to common .problems is also mademore relevani7Crnible and applicable to -the indi-vidualsilarticipating.

The relative effectiveness of the grottodiscussion0--decision method over more didactic*methods cif education and behavioral influence hasbeen well' known to health educators since theearly experiments of Kurt Lewin on changing foodhabits during the war,years,66 and the later, moteextensive experiments of Betty Bond comparinggroup dis'cussions with lectures to encouragebreast examinations. Bond conducted 42 discus-sion meetingi and 33 lectures with 933 woinen.

ti Itiomen exposed to the do.ussion-detision methodsubsequently had a high rate of physician visitsfor breast examinations, a larger proportion estab-lished the habit of breast self-examination, and agreater percentage reported to a physician todemonstrate their technique of breast selfexamination. 67

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Survey of current prograMs. -

Program descriptions: As noted on page one,15 self-care projects were contacted and:or site vis-ited as part of this research. six of them coin-prehensive in their orientation to health problems,aseven focused on4chronic .diseases, and three onpreventive or screening activities. In each site,consumers are taught to become providers of carefor 'themselves.

itie six "comprehensive" self -care programi dif-fer somewhat in scope and approach, but all havern common self-sate for a ,wide variety of problemsor conditions, and all feature a combination of (1)presentation of information about prevention fora number of conditions, and (2) instruction to con-sumers in performing oh their own behalf whathealth providers had traditionally performed. Themost widely publicized of these programs is theActivated Patient Program of the GeorgetownUniversity Center for Continuing Health Educa-tion,. The Geoigetown program includes presenta-

, tions in the following areas. prevention of ar-teriosclerosis, motor vehicle accident, cirrhosis,

stroke, breast cancer, uterine cancer, ancrrheuma-tic. 'heart disease, compliance with medical regi-mens, hypertension; nutrition; growth anddevelopment; common childhood illnesses; con-tracvition, 'family planning, and venereal disease;medications, alcoholism, mental health and familyrelations, yOga, automation in health care, and in-novation in health care., Many of the presentationsare informational in nature, alerting consumers tocauses, war=ning signs, and sensible personal healthbehavior. With respect to teaching patients to per-,form procedures on their own behalf the courseteaches selfadministered blood pressure, ear waxirrigation, hyposensitization shots, and emphasizesfirst aid (bites, artificial resuscitation, serioutbleeding, heart attack, shock, sprains, brusies,etc.). The most interesting aspect of the course isits use of checklists for self-care of common child-hood diseases..The checklists include sections ongeneral, information, important points to re-memlfer in treatment, and when- to call aphysician,

The Regional Self-Help, Medical Care TrainingProject sponsored by the Intermountain RegionalMedical Program was 'patterned after the Acti-vated Patient project. This program uses much ofthe course content of the Activated Paticnt pro-gram with an emphasis on first aid and emergencyaid. The course includes basic first aid 4nd also in-corporates cardiopulmonary resuscitarion andemergency childbirth. The emphasis of the pro-gram on first aid and emergency care derives fromthe distinces of the rural populations from medi-cal facilities.

The Reston -' eorgetown program. -pses a some-.what different format for its self-care education.This program relies heavily on the use ofdecision-making protocols or algorithms for &5common complaints or problems in fourteencategories. emergencies, common injuries;poisons, upper -- respiratory problems; commonskin disorders, childhood rashes with fever; ar-thritis, back pain sand musculo-skeletal problems;nervousness and neurologic problems, chest painand shortness of breath, eye problems, digestivetract, urinary tract, gynecological problems, andsexual problems.The algorithms are visual flow-charts designed to assist consumers in determiningwhen it is. appropriate,to see a physician and whento ,apply a well-defined (i.n the protocol) home

_treatment. The algorithrrls hay? attempted to iden-tify possible emergent conditions-early and to con-centrate on conditions affecting a majority of pa-tients. After a brief introduction to each condition,each protocol defines appropriate home treatment, what to expect in a physician's office, andpresenti its visual, flow chart. The Reston,Georgetown program also includes an educationalcomponent on how to use the health care system.

The North Carolina Memorial Hospital rogramis similar to the Reston-Georgetowz, pro m in

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terms .of its foci. The distinguishing feature of thisprogram is its use of programmccr instrucnrather 'than patient algorithms. .

Both the University of Arizona Self-ProviderProject and the Peter Bent Brigham Htspital pro-gram are less comprehensive than the foregoingfour programs, although they are still multiplefocus programs, The Self-Provider Project isaimed primarily at identification of risk factors forcertain diseases and their effect on health status.After an initial individual health hazard screening,

/ the program cOncentraies, on providing educationon risk factors associed with, and control of:heart disease, hypertension, lung,diseases, depres-sion, and cancer of the breast, cervix, coloriandfectutii. The Peter Bent Brigham program is simi-

lar to the other fodr programs in feat-1ring educa-tion on bodily function; the prevention and treat -ment of common adult illnesses; prevention arA4treatment of common childhood diseases, adole,-cent problems; prescriptions, drugs, and over-the-counter medications, growth and develop-ment; and patient rights.

The remaining nine programs are all disease-specific programs relating to (3), hyper-tension (1), arthritis (1), kidney disease (1),gynecological prevention (1), self thrimt culture(1), and elf screening for gonorrhea (1). Each ofthe fifteeN projects is described in a recently com-pleted report to the Office of the As,sistant Secre-tary for Planning and Evaluation.'Health, DHEW.*

The definition of self-care as "the performancefor oneself of actions normally performed byhealth care providers" restricts the scope of self-care activities to physical activities, foryt-he mostpart. Acquisition of knowledge about ipptopriatediet for diabetes, for example, is not within therealm of self-care according to this definition ofthe term. The performance of the process of diag-nosing oneself when one formetly relied on aphysician to -do so is probably the only non-physical activity that qualifies under this definitionof self-care. Listed below are the activities from thefifteen surveyed programs which we believe fallunder 'the rubric of self-care defined as the as-sumption by consumers of traditional provider ac-tivities. In our opinion, this list is a reasonable def-initial of the state of the art of sef-care accordingto this definition. It does not include basic preven-tion activities which consumers may and shouldtake which providers have not themselves tradi-tionally provided or controlled.

Self-care activities:Diagnosis of common symptoms or conditionswhich occur frequently but need not lead to aphysician visit (included in most of the com-prehensive self-care programs, notably in the

Aithur D.13ak. Int. A Sorm1976).

Heads Uscatue Proms (January

29-

patient algorithms used in the RestonGeorgetown program)Insulin injection (diabetes educition pro-grams)

Urine testing (diabetet education programs,and the North Carolina Memorial Hosptial).Breast self: examination (FreestandingWomen's Health Center and North CarolinaMemorial Hospital)

Cervical self-examination ( FreestandingWomen's Health Center)First aid for common injuries (comprehensiveself-care programs)Emergency care

--scardiopulmonary resuscitation (Intermoun-tain RMP Regional Self-Help Program).

emergency childbirth (Intermountain RMPRegional Self-Help Program)

other emergencies (comprehensive self-careprograms)

Taking blood pressure (North CarolinaMemorial Hospital, Activated Patient, ,GroupHealth Cooperative, IRMP Self-Help Pro-gram)Throat culture (Columbia Medical Plan Pro-grata)Hyposensitization injections (Activateh Pa-tient) rEar Wax irritation (Activated Patient)Kidney dialysis (Central New York RIP)

4! Physical therapy for arthritis (IRMP ArthritisProject)

Self-medication for asthmatics who had pre-viously depended on an emergency room(John HOpkins).

Evaluation in projects? surveyed: In the fifteenprograms surveyed, relatively-little impact evalua-don has been' conducted so far, although a fewprograms plan more rigorous evaluation. Theevaliiation of the asthma project will be describedin the section of the report entitled "A CaseStudy." For many programs, conducting evalua-don of the program's. impact on patient healthstatus would require additional ng or re-budgeting to an extent that w d Jeopardize" theprogram itself. Others have t existed for a suffi-cient ;time to permit the f rmulation cran impactstudy. Most programs have eithei. Condticted.short-ter m evaluations of program_effectivenesswhich do not address the issue of long-term sus-tained impact, or process evaluations which havemeasured patient satisfaction with the educationalprogram or patient perception of how to improxematerials, lectures, etc. It would be Rarticularlyteresting to evaluate the results of comprehensive

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selkare programs with emphasis Pn utilition ofhealth services before and after such educational

:.14 -interventions, since these programs 4d3ress a widerange of self-care iisues. -

. The state of evaluation.in the self-care programssurveyed is described beloW:

Both, the Monroe County ganp,tErhea screeningprogram and tlxe Colurnbia Medical PlanThroat Culture program:have carefullyevaluated their results.. Self screening forgonorrhea his encountered some difficulties,while throat cultures have been shown rea-sonably reliable; - .

The Group Health Cooperative, of PugetSound diabetes program hopes to implement along-term experimental impact valuation de-sign to follow patients for up.to one year afterparticipation in the 'educational program. Todate, the 'program has conducted measure-ment of knowledge and skills via pre-test andimmediate post-test, together with subjectiveprocess evaluation by participants. -

"The Group, Health Cooperative of PugetSound hypertension program conducts subjec-tive process evaluation, and haye proposed theuse of a long-term experimentakdesign using apretest and periodic post -tests Co measure pa-tient attitudes, knowledge and skill levels,

The Georgetown Center for Continuing Edu-cation Activated Patient program for collectedanecdotal evidence of prograrri impact. Morerigorous impact evaluation was being planned.

The Intermountain RMP Regional Self-Help. program had collected self-reported post-course data on patient behavior in the firstyear, but neitifer pretest data nor controlgroups were available for comparison, Sys-telluric evalUation was planned for the secondyear of the project.The North .Carplina Memorial Hospital pro-

. gram measures post-t..Surse patient knowledge. immediately' with a questionnaire. long-term

impact evaluation had nett beth planned.

, The University of Arizona Self-Provider proj-ect was in the process of planning a formal

< evaluation of its efforts.- The evaluation willinclude patient rescreening at stated intervalsfollowing educational intervention to measurechanges in risks factors, and a pre-post ques-tionnaire to measure changes in attitudes,knowledge, and behavigr over an extendedtime -.period. -

The Dia4tes EdU,cation Center measures, on asliort-te4 basis, patient knowledge level andhealth status. The program also measures pa.-tient- satisfaction with the educational process.No long-term evaluation is conducted.

The Reiton-Georgstown program is currentlyplanning an impact evaluation design. Theprogram is located ;within a health mainte-nance organization with a well-defined, essen-tially captive Population, a highly,_desirable"laboratory" for impact evaluation studies.The Freestanding Women's Health Centermeasures patient satisfaction with the eare andeducational process. ,

,Peter Bent Brigham Hospital's program con-ducts a process evaluation aimed primarily atmonitoring patient satisfaction.The Intermountain Arthritis Project has pre-sumably conchIcted an evaluation, since it isrequired to do so by RMP. No data on theirevaluation was available to A.M. Similar con-siderations apply to Central New York RMPprograms.

Summary of major observations: From the su r-vey of self-care programs we not e recentemergence of comprehensive (many . tcs, many.educational sessions) self-care progricas. Six ofthese programs were described in the accompany-ing text, knci" we are aware of three, Otherbased programs as-well. The development of these_programs, most of which are still in their infancy,signals a new trend in consumer health education

otedself-h_ elp/self-care "'programming. We ha nprograms toward multiple foctis, self-d'elf-

even in the few programs we identified, the ex-pansion and popularization of this type oE pro-gram both in professional circles and in the healtheducational literature.

A second major finding, is that consumers arebeing educated more than ever before to assumeresponsibility for tasks previously conducted byhealth providers. The actiyisies we identified werefisted in the text of this chapter previously, andencompass self-diagnosis, self-screening and self-treatment, tasks.

Third, The emergence of the patient algorithmor ,checklist for medical decision-making, used inthe Reston-Georgetown program and the Acti-vated Patient program, is a new technology of po-ientially major significance. The application of awritten, precisely defined protocol for diagnosingand treating minor complaints (and for knowingwhen they are more serious) is a method which, ifproven effective, can be used in a wide-spreadmanner with important implications for reducingthe pressure on the,ambulatory care delivery sys-tem and its manpower.

Finally, we have found that evaluation effortshave been limited in.this field primarily to meas-

,urement of patient knowledge, attitudes, skill andbehavior over very short time periods, and toprocess evaluation of patient satisfaction with edu-cational programs and/or patient perception ofeducational materials and methods to improve

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them. Furthermore, this level of evaluation wasnot always reached the comprehensive self-careprogram.s. No long -term impact evaluations, were

.ide.ntifred, in the programs we surveyed, On amore hoperul note, however, many of the pro-grams described here were planning todesign

eplement long-term impact evaluations. Suchvaluations are to be encouraged if we hope to as-

certain the' effectiveness, of self-care programs.

°Research,and demonstration issuesMeasurineattitudinal change: An area of ex-

tensive prior experience 'and research related toself-care is the psychological study of a personality

26 or attitudinal construct called internal control ofreinforcement% introduced by Rotter in 1954, nowgenerally, called lOcus of control. The prodigousflow of research on this subject now exceeds 1200documents. 68 The bibliography of Throop andMacDonald 69 and the review by Joe 7° provide themost comprehensive outlines of The literature inthis aspect of belieisin one's ability to control ex-ternal forces or be controlled by them.

The indications that locus of control can be:shifted from external to internal on belief scalesthrough "intern'ality training" in areas such asrehabilitation 71-72 makes this variable most rel-evant to -the potential evaluation of self-careprograms.

-Specific instrumentsqo measure some aspect ofinterjiality or to place -individuals on a scale ofinternal vs. external 1 s of control have been de-veloped and widely st ndardized. 73'9° The I-Escale developed .by Rot r 82 has been the most ex-tensively employe these measures with overeighty publishe applications of his original in-dex. 90 The several variants for application with

.children, 73-81 youth, 87-88 and addicts 87 givegreater sensitivity to the measurement of locus ofcontrol in these groups. A scale has been recentlydeveloped to measure locus of control. specifically

sih relation _to health. gi --The utility of the Health Locu's of Control Scale

.(HLC) in evaluating self-care programs is that itprovides an intermediate measure of programoutcome that is known'to have prediculie -validityfor health behavior. 81 It also has construct validityinsofar as the purpose jif self-care programs is toincrease self-care behavior through a process ofincreasing the self-confidence of patients or con-sumers in con-trolling the fortes that influencetheir own health. 92.83

Strickland noted eleven studies in which positiverelationships were foundAxtween internal locus ofcontrol scores pn the more general scale andhealth behavior." Instances of negative find-..trigs," " have been attributed to the use of the

-generilized IE scale rather than the more specificHLC scale, 9r and the failure of investigators totreat the value placed on health as a separate %ari.

able.97 When high valuation of health relative ti)other valftesgi is taken into account, the predictionof health actions 'from internal locus of control isgreatly increased. 91. 99, 10°

Mtn, it will not be suffici4nt for self-care prd-grams to increase internality of control in patitinisor consumers unless they already place a highvalue on the health goal or practice advocated. But .if' they value the health goat or practice, theirinternal control of reinforcement becomes crucial kto their adoption of self -care practice. Measure-ment of these /two predisposing variables (HLCand value placed on self-care) is therefore as im-portant as measuring health knowledge.

Research and demonstration efforts in Self-careshould also include monitoring or the anticipated,by-products of the 'decline of medicocentrism,namely the attitudes 'of patients and consumerstoward providers and medical care services. Aleast five measures of patient attitudes toward doc-tors and medical care appear to have been pub-lished on the basis of standard methods of scaleconstruction. igi Zyzanski et al, have provided aThurston scale of patient attitudes toward thecompetence and personal qualifies of physi-cians. 162.)03 Franklin and Mc.Lenpre also usedThurstOn methods to developndex of attitudestoward student health service s. Apdersen 105 and'Suchman 108 used Guttman scali criteria to delvelop Measures of attitudes toward health seryicesand quality of care. Suchman focused on doubts ofethnic groups about the claims of orlifessionalmedicine and desires to check on doctors, and theirbehavior, but his findings were not replicated byBerkanovic and Reeder 107 or by Geertsen tt a1,"8'in populations v. -fill-different self-care and popular-medical orientations than Suchman's New York'iampld. Ware ansl-Snyder have used factor analysisto identify more detailed dimensions underlyingpatient satisfaction with doctors and medicalcare. 109

The reason for urging study of this 'variable in,future evaluations of self-card prograrks is to pro-'

for a response to the concerns of the medicalcommunity over disruption of doctorpatitnt rela-tionships and eroding of patient conffdence inmedical treatment. The trend in self-care awayfrom the tradition4 dot-for patient relationship isprobably inescapable, 110 but whether this neces-sarily jeopardizes Valk), of carp and compliancewith prescribed regimens is a debatable questiondeserving of research as self-care programsprogress.- It is an error for the medical community to as-sume that the "traditional" doctor-patient,relation-ship was one of congruent expectations. Se; oralinvestigations in the 1950s revealed major dis-crepancies between lay expectations and profes-sionals' views of their role in health care. 1-11-113Subsequent studies showed that even the patients

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of higher socio- economic status, who tericlto bemore congruent with professionals in their expec.rations, do not have their expectations fulfilled byproviders. X14-116 Furthermore, it is not necessarilythe case that failure to meet patient expectationsleads to non-compliance."7 It is sometimes thecase that patients have no firmly established expec-tations, especially with regard to specialized care,118 which would be the rule rather than the excep-dim in a systein which encoujged self - care. Fi-nally, the few precedents in which health plans en-courage a degree of self-tare aid emphasize con-sumer education indicate that consumer behaviorand expectations for utilization. of health servicesbecome highly congruent with the expectation; ofproviders. """

It is notable that these few precedents are of re-cent vintage. In a review of 450 articles describingpre-1970 patient education programs, the Ameri-caii`Holpital Association .found that "No programdescribed endeavored to fink educational serviceswith illness recurrence or readmissionproblems..., 126

'Measuring behaiioral outcomes: Standardizedmeasures of behavioral outcomes are betterdeveloped than measures of the antecedent andprocess variables discussed above, but agreementon methods and procedtires for collecting, analyz-ing and -interpreting behavioral methods is far

. from unanimous. The most extensive methodolog-ical work his been with indices of health serviceutilization. iv Recent reviews of the literature,however, reveal wide discrepancies on "criteria of

"'adequate" or "appropriate" utilization in terms ofdelay,1"-129 and the frequency or duration of re-turn appointments. 130.136

Larger discrepancies are found_ in the measure-ment ofspreventive health practices, 7" 14° in com-pliance with medical regimens, /41 145 and in risk-reduction behavior (screening tests, smoking,weight control, diet, etc.). 142 145 The overlapamong these behavioral categdries is part of theproblem but the lack of agreement on measures ofbehavior within categories is more than a classifica-tion problem.

Behavioral outcome's can be m easured againstprevious behaiior as well as absolute standards:Imp ement can thus be a success measure; thest dard becomes the level of improvementspecified.

Measuring manpower implications: A majorevaluation issue relates to the manpower implica-tions of self-care programs. Self-cap programshave as a principal objective the assumption ofprovider functions by consumers. Elsewhere inthis paper we have listed such functions as cervicalexamination, throat culture, hyposensitization in-jections, and blood pressure reading as exa.mpleAof traditional provider activities which consumersare being-taught to perform for themselves. An

'3?

important qtrestion for,,such progra thus be-comes,, can substitution of consumer f protidermanpower occur in a manner significa enoughto demonstrate reduced provider ma powerneeds? What types of providers are most likely tobe "replaced" by activated consumersphysicians,nurses, paramedics, lab technicians, or other's?How do the provider manpower reductions thatconstitute one theciretical benefit of self-care pro-grams balance against the educational manpowernee,ded to teach consumers effective self-care?How much provider time previously used in thetreatment of conditions now/treated by en-lightened, self-caring consumers will be applied inthe care of those whose problems or conditionsdemand the exercise of professional judgment andskills?

Con-benefit analysis: An issue closely related toevaluation-of the manpowerAlications of self-care progranis is that of co nefit , evaluation.On the most visible level, one can readily estimatethe cost of an educational program on a total orper participant basis, incorporating direct pro-gram costs and the opportunity costs of the prartic-ipants. time. The comparison of such costs to dol-lar estimates of Program benefits, however, issomewhat more complicated. One must first beable to measure program benefits accurately. Thebenefit most educational programs aim. for is anappropriate improvement in participant healthstatus, or alternatively, the prevention of furthe'tdeterioration (4.e., stabilization). How one meas-ures patient hlth status is a key issue here, as isthe period of time over which it is measured. Fur-thermore, one needs to be able to link appropriatehealth status changes with measures of the pa-tient's social productivity in order to derive esti-mates of the economic benefit gained from im-proved health status. If an educational programleads to better health for a patient through ini-proved health behavior, which in turn leads tofewer sick days off from work per year and twoadditional years of life in which the patient worksinstead of retiring for health reasons, one canbegin to measure the economic bergifil of the pro-gram in terms of (I) sick days "saved," (2) years ofwork galned, and (3) reduced burden on socialsupport programs for the elderly. Such measuresneed to be further augmented by estimates of thevalue of provider time freed for other ptirposes bypatient self-care. -

Needless to say, the identification,' measure-ment, and quantification of programmatic benefitsin self care is extremely difficult in itself, andneeds focus 'on both the patient and the pro-vider. . cing an economic value on programbenefits is equally difficult,-involving issues of val-uation (social discount rates, future dollars, speci-fication of a "stream" of benefits over time, etc )that often became very complicated. It is not our

27

intention to disoiss such methodologic issues here.They have, in fact, been extensively treatedelsewhere, iri the growing literature "on cost-benefitanalysis for public "programs. Rather, we hope bythis discussion to stimulate thinking on the need inthis area, as in other .program areas, for carefulevaluation of progfam benefits against,programcosts.'

,Measuring the limits of self-care: Anbther re-:search- issue in self-care is investigation of the ex-tent to which self -care can rqlfy be undertaken.We know, For example, that diabetic patients havefor years self - administered their insulin injections,and that this type of self care has become, in fact,accepted 'patient care. At the other extreme, wecan probably not ever expect ,a consumer to per-form an appendectomy or any other surgery onmembers of his faniily. Somewhere in between theuncomplicated chronic care functions and tke per-formance of major surgery lies the upper limits ofpatient .vif -care. Which clinical functions can con-suwex', really perform for themselves? How reli-able will consumers be relative to trained profes-sionals? Ten years ago, Cervical self-examinationwould probably have been considered a health-endangering practice; today, its reliability is beingtested by such groups as the women's communityhealth center. .described elsewhere in this paper. .

The extent to which consumers can truly become__ A case study

4,

The need for standardized evaluation meas-ures: The major Obsiacle to advancing the scien-tific base of health education practice in self-care_programs is clearly the paucity of standardizedmeasures of both input and outcome variables.

, This precludes the comparison of findings be-tween studies and limits the generalizability of re-sults. The scientific and professional literature re-lated to health education is mushrooming in boththe behavioral science and the health sciencelmr--nals,but it lacks the cumulative quality essential tothe codification of knowledge and the develop-ment of policy that will hive a coherent the eticalbase. These observatioAs lead to a majomendation for governmental action to'methodological research on the mself -care variables and the standard'struments to improve the comphip from various self-care stucliommendation should be toleplicative studies Most grabeen for isolated, ad hocevaluative research pro

- educational strategiestings, or with carefusess the costjeffectireness of different methods orcombinations of methods.

recom-ourage

rement of'oi of in-

ility of find-s. A related rec-

ease _support foi.and contracts have

udies, rather than forin which the same

e retested in different set-controlled variations to as-

'their own physicians has not yet been determined.Can consumers be trained to deckle systematically,and in non-trivial situations, when to seek profes-sional attention and when to care for themselves?The state of the art of selfkare is continually ex-pandiii& research is now needed to Probe its ulti-mate limits.

Measuring the utility of consumer algorithms:A tn9re concrete research issue involves evaluationof the utility of patient decision checklists or al-gorithms in self-care. Can such checklists be reli-ably written by providers and uniformly applied byconsumers intheir own care: Answers to this ques-.tion will help determine whether simplified medi-cal "textbooks" and decision trees for patients cansuccessfully be integrated into the nation's healthcare system.

Measuring the applicability of self-care educa-tion to various population _groups: A legitimateresearch question to address is the comparativesuccess of.seff-care education in different_ popula-tion groups. Can technical information O'n selfcare be transferred to or absorbed by all poptila-don groups with the same ease? Some programs,for example, have been aimed primarily at middleclass, sophisticated, educated population groups.Can they be equally well applied to lowersocioeconomic groups, or in rural ai-eas? A needexists for demonstration of self-care programsunder various population circumstances, and forcomparative evaluation of program results.

Studies reviewed earlier have established the ef-ficacy of group discussion as a powerful educa-tional method to improve preventive health prac-tices and to improve patient compliance with med-ical regimens. The following case study is pre -sented' as an example of the potential of sell -caneeducation, to improve appropriate utiliz,tion Ofhealth services and facilities.T Specifically, hips-trates the efficacy of group discussion as an educa-tional strategy, with chronic, but ambulatory as-thmatic patients, to reduce their *dependence on

. emergency department facilities by increasingtheir self-confidence, ability and commitment to

,cope with mild symptoms.

Rationale for the asthma education program:The design of the educational approach to asthma-tics for this pilot study_was based on four be- ;havioral assumptions or propositions derived froMexperience with asthmatics:

1. Many asthmatics are frightened by their -dis-ease. The fear of not being able to breatheduring the onset of asthmatic symptoms in-creases the severity of the attack and compels

- the patient to seek:relief at the nearest emer-gency room. '

2. The asthmatic assumes, proliably correctly, -

that others who have the same disease can'most fully understand this fear and the prob-lems of coping with symptoms. ,-_ t

3. Theref re, in order both to prevent, the3 :

iety associated with asthma symptoms and toincrease the asthmatic's confidence in coping'with the symptoms of an attack, asthmaticswould benefit most fro* talking with each',other under controlled circumstances.

4. The limits of control exercised by the profes-,'sional in the group discussions among as-thmatics should be:(a) to prevent them from arriving at a con-

clusion that asthma is unmanageable,(b) -to provide desired tec.hniCal information,

upon recinest, about the best methods ofmanaging gypiptoms, and

(c) to support or encourage expressions ofconfidence in correct self-management of.asthma.

It should be emphasized that an educationalcgigram based on this approach need not

'citly discourage the use of the hospital emer-gency department.s.The focus is on preveptivemeasures and the management of early_symptoms.

Study population: Patients were selected for thisstudy who had come to the Johns.,Hoplcitcs Hospi-tal Emergency-Room between May 28 and June 29,1971, were between 15 and 45 years of age, andlived in either the hOspital postal zone or one ofthe four surrounding postal zones. They had pre-sented as asthematics in distress, as determined bythe physician who entered the diagnosis of asthmaor bronchial asthma, and who recorded adminis-tering medication to the patient while in the emer-gency room. The_patients did not have lungtumors, chronic bronchitis, tuberculosis, or heartfailure, as determined by review of emergency'room patient records, and confirmed by (patientinterview. Patients meeting these criteria wereselected from the emergency room billing recordsand randomly distributed between two patientgroups, experimental and control, 29 in eachgroup.

Letters of explanation were sent to choseselected for'the stsudy, and all were visited at theirhomes to gain their cooperation and to distributediaries for recording symptom, levels. The controlgroup was asked to fill out the symptom diary eachday, so the investigators could study asthma by 06serving how they were feeling, whether they wereusing medicines, and if they had to use medical,services. The experimental group was asked to fillout the diary for the same reasons, and was alsoasked to attend one evening group mepting withother neighborhood asthmatics to discilss and tolearn from each other about. the management ofasthma. Patients in neither group knew they werebeingcompared with other patients.

Educational program: In five, group meetings,cacti with fOur to six different patients (each pa-tient attending one meeting), a medical studeptconducted group discussions with emphasis on fac

et.

tors contributing to asthma which can be alteredby patient behavior. Four areas were considered.one, life style, with.attention to smoking, obesity,interpersonal relations, tension, emotional stress,and fatigue, two, allergens in the environment,and measures which can be taken to eliminatethem; three, general health measures, includingmaintenance of good Physical condition, avoidanceof colds and respiratory infections as well asprompt attention to incipient colds, avoidance ofclimatic extremes, proper dress, and rest; andfdur, use of drugs, prophylactically and in an at-tack. Appropriate patient behavior in relation tothese areas was expected to decrease the seventyof symptoms and the necessity of resorting to thehospital emergency room' in. response Ito symp-toms.

In the group m u , the discussion leader, 0third-year-medical siud nt, provided a comforta-ble setting, tried aintain h nonthreatening:group climate, and provided minimal but essenOhldirection as the group members addressed theirmost pressing concerns, anxieties and' questionsabout their aithma and its management. Effiirtwas mad, by the 'discussion leader to initiate agroup-decision process in which the group wouldagree on particularly effective means to manageasthma. Emphasis was placed on the early recogni-tion of an attack, and the importance of rest andprompt medication to ameliofate it. The conse-quences of running out of medicine were alsostressed. The five meetings, one for each group of4 to 6 experimental subjects and lasting between75 and 90 minutes, took place in the evening inclassroomfi of the Johns Hopkins.University Schoolof Hygiene and Public Health: -

Evaluation of the patient education prograni:To evaluate the effectiveness of the. group discus-sion sessions-, Three sources of data were used:symptom diaries, interviews and hospital records.The patients in the group discussions (experimen-tal group) maintained daily symptom diaries whichcould be compared with identical symptom diarieskept by the patients in the control group. All pa-tients rated the severity of various symptoms, in-cluding chest tightness and breathlessness, wheez-ing, cough, and quantity and color of sputunf. Thesymptom diary had the advantage of having beenused previously to evaluate a new drug for asthmain a recenily published study. 17 Patients were alsoasked.to record for five 'peeks their use ofmedicine and visits for care of asthma to theemergency room, to their local physician, or anyothercolletweeks,

ource of care. The symptom diaries wereed at jntervals of one to one and one-half

ith the majority of study participants hav-ing one to two weeks of practice filling in thediaries before they began keeping diaries used forevaluation. During visits to pick up the diaries, theinvestigator interviewed patients in both groups to

4

29

determine age, past sources of care, duration ofasthma, years -of schooling, and use of Medicaid.Emergency room utilization was monitored forfour months (July 19 to Novembei 19, 1971) afterthe educational sessions by checking the daily

-emergency, room billing records f9r visits for as-thntic__treatment by patients ,in both studygroups.

Retults: Of the 58 patients randomly allocatedto the experimental and control groups, data werecoltected from 26 in the experimental group (twohad incorrect addresses li&ted and could not be lo-cated; one could not be contacted 'more than one

Mime)' and 26 in die control group (one movedwithout- a forwarding address; one could not becontacted after several initial visits; one was elimi-nated because she was the mother of anotherwoman in the experimental group). In the ex-perimental group (n = 26) there were eight blackmen, seventeen black women, no white .men, andone white woman. In the control group (n = 26)there were nine black men, fifteen black women,bne white man, and one white woman. There wefeno sitnificanidifferences in the ages, educationallevels or duration of asthma between the experi-mental and control groups. Approximately two -thirds of both groups were eligible for and usedMedicaid. Only two patients in each group indi-sated upon questioning that they had used otherthan Johns Hopkins Hospital emergency room fortreatment of an asthma attack in the previous year.

Symptom levels: The symptom diaries yieldedinternally consistent data, although a few patientshad some difficulty learning how to fill in their di-ary. In all cases, a non-judgmental clarification orexplanation overcame the difficulties. Diaries were'scored for symptom levels according to themethods of Chen and Assdciates. 146

The symptom-level data for both the experimen-tal and control groups during the three weeksafter the educational sessions (July 19 to August 9,1971) are presented elsewhere.123 The controlgroup mean symptom levels for chest rightnessand breathlessness and wheeling (38.8 and 35.5),were higher than the cqrresponding means for theexperimental group (31.9 and 26.8). The controlgroup, however, had lower mean symptom levelsfor cough and sputum color and sputum amount(74.4) than the experimental group (84.7). Whenall the symptom level data were totalled, the meanfor'the experimental group (148.5) was lower thanthat of the control' group (450.2). None of thtse.differences, however, was sufficient to achievestatistical significance at a probability of .05 orlower.

Emergency room utilization: Cumulative statis-tics on the emergency room urih72tion by the 6:-periniental and control groups during the fourmonths after the group discussion sessions (July 19to November 19,1971) are presented in 'figures 1

and 2. These data are based on hospital recordsrather than verbal reports of the subjects.

Figure I illustrates the cumulative number ofdifferent asthmatic-patients returning to theemergency room for treatment of their asthma Inthe first five weeks, nine dilterent patients in thecontrol group went to the emergency room for=treatment, while two different patientS in the ex-perimental grciup visited the emergency room.This difference is statistically significanvat p < .05(X2 = 4.15). During the subsequent twelve andone-half weeks this trtnd continued, with moredirrent individuals in the control group than in

Figure 1

1

70

60

50

40

30

20

10

CONTROL GROUP28)

EXPERIMENTAL GROUP(N .t 26)

0. . I I-,0 2 4 6 8 10 12 14 16 18.

JULY 19, 1971 WEEKS NOVEMBER 19, 1971'

Figure 2'

CONTROL GROUP281

`.." EXPERIMENTAL GROUP(N E. 28)

JULY 19, 1971 WEEKS NOVEMBER 19,1971

35 .

Iheexperimental group treated for asthma in theemergency room.

Figure 2 illustrates the cumulative total numberof visits to the emergency room for asthma treatmentb, the experimental and control group fromJuly 19 Co November 19, 1971. The cumulativetotal for the control group was at least two timesthat of the experimental group at all but one ofseventeen weekly intervals, with the absolute difference In the number of visits between the ex-perimental and control groups increasing from 13visits at five weeks, to 36 visits at ten weeks, to 47visits at fifteen iveeks, and to 55 visits at nearly 18weeks. z

At the end of four months this reducedAmer-gency room utilization, assuming a cost oF$20 peremergency room visit, represents a $ , 00 reduc-tion in the cost of care for the expe ental group.

Discussion: If the signi nt differences be-tween experimental antntrol groups can be at-tributed to the ego-eness of the group discus-slat tearnique;iten the value of mutual teachingby asthmatics of each other, of shared insights andfFelings, and the value of group consensus regard-ing the importance of various means of managingasthma, are confirmed as important educationalvariables. These distinctive features of thegroup discuTsiOns conducted with the experimen-tal group. A conscious attempt was made not to in-fluence attitudes or behavior during other phasesof the study. During visits to collect diaries, the in-vestigator was friendly with both groups, but at-tempted to provide no educational information,except to answer occasional questions as briefly aspossible. In large part, the patients who askedquestions received confirmation 471.---leir presentpractices from the investigator. It is not likely thatanswering questions biased results in favor of theeducated group, for the majority of time discus-sing problems was spent with patients in the con-trol group.

The important result of this study is the de-creased emergency rom utilization by the groupdiscussion participants as contrasted with the con-trol group. Without specifically discoutaging.tbeuse of the emergency room, significantly smallernumbers of asthmatics in the experimental groupwere treated in the emergency room for at leastfive weeks after the educational session. At the endof the four months, 16 of 26 control group mem-bers had been treated in the emergency room,compared with only 9, to 26 patients in the experimental group. One would expect on the basis ofthe previous experience of these asthmatics, that atthe end of an extended period of time a highproportion of both groups would have returned tothe emergency room. A difference, however, per-sists for the four-moath period of this study. Thepotential of periodic educational sessions to maintain a disparity for a longer period oPtime should

be considered. Of greater concern from a cost -benefit standpoint is the effecenot on number ofpatients but on the cumulative total number oftis-us to the emergency room for asthma treatment.The control, group during the four months of thisstudy had at least twice as many visits as the ex-perithental group at all but the seventh week whenthe ratio was unly slightly less than 2 to 1. The ab-solute difference in the number of visits betWeenthe 9perimental and control groups increasedfront 13 visits at 5 weeks, to 55 visits at 4 months.

The most conservative assumption one mightmake in extrapolating from these results would bethat the difference (the reduction in emergencyroom visits) disappears after four months. In fact,the lines in Figure 2 appear to be diverging Latherthan converging, but a- minimal estimate of impactis possible without making assumptions beyond theexisting data. Taking the reduction of 55 visits for26 patients, or approximately 2 visits per patient,.as the most that should be expected of a singleeducational program, and 5 patients as the optimalnumber for each group discussion, some specificcost-benefit ratios can be derived and generalized.

An emergency room visit at the time cost $20.Whether this amount was charged to the patient,

/ to Medicaid, orto another insurance carrier, eachpatient visit to the hospital emergency room coststhe medical care system an' average of approxi-mately $20. The educational program, consistingof one group discussion-decision meeting for atleast five patients,.results in at least ten visits fewerthan would besxpected of the same asthmatic pa-tients!, receiving the standard emergency-roomtreatment of minimal education. Thus a savings of$200 in return visits accrues for each educationalsession.* At a maximum cost of $40 per discussionsession, the cost/benefit ratio would be at leastI .5.

A" IlLof the above assumptions, however, are con-servative. It is likely that the impact of the pro-gram on the continued reduction of emergencyroom _visits does not disappear after four months.It appears,. in fact, that the early success of ex-perimental patientsin coping with'their symptomsreinforces their confidence and further reducestheir need to depend or the hospital emergencyroom for help. The number of patients that can beadequately educated in a discugion session may beus many as ten or fifteen rather than only five. Layvolunteers with minimal training may be as effecfive as a professional in legding the discussiongroups, thus reducing the cost component. The$20 savings per emergency visit prevented doesnot take into account the associated savings to thepatient of transportation to the hospital, time lostfrom work, and .the general benefits of securityand comfort in being able to cope with symptomsand to avoid severe attacks.

36

31

noes for appendix 0

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7

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..

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'nal of Public Health 43, 888-893 (1953). . -

64. Goodman, J.J., E.D. Schanz, and L. Frankel,"Gi.oup Therapy of Obese Diabetic Patients."Diabetes 2, 280 -283 (1953).

65. Linde, T.F. and C.H. Patterson, "Influenceof Cfrthopedic Disability on Conformity Be- '38

33

haVipr.1"

Journal of Abnormal Social Psychology68, 115-118 (1964).

66 Lewin, K., "Group Decision and Soc ialChange." Readings in Social Psychology, 330-33-V(Hemy Holt, and Co., New York,,1947).

67. Bond, B.W.,Group Discussion-Decision. AnAppraisal of Its Use in Health Education (Min-.-nesota Department of Health, Minneapo14,1956)..

68. Thornhill, M.A., A.J. Thornhill, and.M.B.Young,man, "A Computerized andCategorized Bibliography on Locus of Con-trol." Psychology-Reports 36, 505-506( (1975).

-69. Throop, W.F. and A.P. MacDonald, Jr.,"Internal-External Locus of Control. A Bib-liography." Psychology Reports 28, 175-190(1971).

70.' Joe, V.Cl)ezfiew of the Internal-ExternalControl Co struct as a Personality Variable.-Psychology Reports 28, 619-640 (1971).

71. MacDonald, A.P., "Internal-External Locus. of Control Techniques.- Rehalnluanon Litera-

ture 33, 44-47 (1972).72. Wallston, B.S. and K.A. Wallston, "Health

Care Education Programs..Training PatientInternality." Paper presented at the Amen-can Public Health Association, San Francisco(Noyember 1973).

73. Battle, E.S. and J.B. Rotter, "Children's Feel-ings of Perstftliil Control as Related to SocialClass and Ethnic Group." Journal of Personal:ity 31, 482-490 (1963).

74. Couch, A.S., "Psychology Determinants ofInterpersonal Behavior." Unpublished doc-toral djisertation (Ha-ard,Uni%ersity, Cam-bridW, 1960).

75. Divaitat. F.J. and J.C. Merwin, "The Effectsof NeeN-Oriented Communications on At-titude Change.- Journal of Abnormal and So-cial Psychology 16,4311-315 (1970).

76. Fitch, G., "Effects 'orSelf-Esteem. PerceivedPerformance and Choice on Causal Attribu-tions." Journal of Personality and SocialPsychology 16, 311-315 (1970).

77. Gurin, P., G. Gurin, and M. Beat-` tie, "Interrial-External Control in the Moti%a

tional Dynamics of Negro Youth." Journal ofSocialissues 25, 29-53 (1969).

78. James, W.H.,"Internal vs. External Contr-al,...of Reinforcenients as a Basic Variable inLearning Theory:- Unpublished doctoraldissertation (Ohio State University, Colum-bus, 1957).

79. Jessor,. R., T.D. Graves, R.C. Hinson, andS.L. Jessor, Society, Personality, and DeviantBehavior. A Study of Tri-Ethnic Community(Holt, Rinehart and Winston, New Yotk,1960.

80. Liverant, S. and A. Scodel, "Internal and Ex-, ternal Control .as Determinants of

Decision - Making Under Conditidns of Risk."Psychological Reports 7, 59-67 (1960).

81. Milyr, 1.0., "The Children's Locus of Evalu-ation and Control Scale." In Abstracts of Pea-bc;cly Studiei in Mental Retardation, VOL 3, H.G.Haywood.. and R.W. Woodcock, Eds. (GeorgePeabody College, Nashville, 1965).

82. Rotter, J.B., "Generalized Expectancies forInternal Versus External Control of Rein-forcement." Psychological Monographs. 80, I,whole no:609 (1966).

.83. Schwartz, S.H., "Words Deeds, and the Per-ception of Responsibility in Action Situa-tions." Journal of Personality and SocialPsychology 10, 232-242 (1968).

84. Shaw, M.E. and J.C. Sulzer, "Am EnipiricalTest of Heider's Levels/of Attribution of Re-sponsibility." Journal of Abn.ormal and SocialPsychology 69, 39-46 (1964).

85 Seeman, J., "Personality Integration in Col-lege Vflomen." Journal of Personalit? and SocialPsychology 4, 91-93 (1966).

86. Strodtbeck, "Family InteractiOn, Viluesand Achievements." In Talent and Society,D.C. McClelland,.et al, Eds. (Van Nostrand,Princeton, 19A.

87. Schneider, J.M., "Skill Versus Chance Activ-ity Preference and Locus of Control." Journalof Consulting and Clinical Psychology 32, 333-337 (1968)-

88. Washburn, W.C., "Patterns oConceptualization in High Schlege Studentt." Journal of EPsycholo -2, 123-131 (1961).

88. S' , S., Jr. and M.P. Duke, "A Locus ofControl Scale for Non-College as W ej as l-

lege Adults." Journal of Personality Assessment38, 136-137, (1974). ",

90. Chun, K., S. Cobb, and J.R.P. French, Meas-ures of Psychological Assessment (Survey Re-search Center, University of Michigan, AnnArbor, 1975).

91. Wallston, B.S., K.A. Wallston, C.D. Kaplan,and S.A.Maides, "Development and Valida-tion of the Health Locus of Control (HLC),Scale." Unpublished manuscript (VanderbiltUniversity, 1975),

92. Green, LW., D.M. -Levine, and S.G. Deeds,"Clinical Trials of Health Education forHypertensive Outpatients: Design andBaseline Data." Preventive Medicine 4 (m'press1975).

93. Green, LW., D.M. Levine, J.M. iVolle, andS.G. Deeds, "Development, of Patient Educa-tion Strategies for Hypertensive Outpatientsfrom a Diagnostic-Baseline Sutvey.i Paper

Self-and Col-cational

39

fresented at the American Public Health As-soaation, Chicago (Noyember 19, 1975)-

94. Strickland, B., "Locus of Control: Wherehave We Been and Where are We Going?"

. Paper' nted at the American-Psychologi-.

MIK on, Montreal (1973).95. an, MN., "Compliance with Medical

R A Review of the Literature."blurs-lit Research 19, 312-323 (.1970)..

96. CYBryan, G.G., "The Relationship Betweenan Individual's I-E Orientation andInformation - Seeking, Learning, and Use ofWeight Control Relevant Information." Dis-sertation Abstracts International '33 (1-B), 447(1972).

97. Rotter; J.B., "Some Problems and Misilbncep-titres Related to the Construct of Internalversus External Control of Reinforcement."

Journal of Consulting and Clinical Psychology 43,.56-67 (1975).

98. Rokeach, M., of Human Values(The Free Press, York, 1973).

99. Kaplan, G.D., "Externally and InternallyObese: The Application of Locus of Controlto the Treatment of Obesity." Unpublishedmanuscript (Vanderbilt University, 197**

100. Maialt-;"S.A.,--"Fector5 Influencing Health-Rel Informatioii"Seeking.'irnpublishedmanuscript (Vanderbilt University. May1974),

11)1. Ware, J.E., W.R. Wright, M.K. Snyder, andG.C. Chu, Consumer Perceptions of Health CareServices: Implications for the Academic MedicalCommtinity (American Heart Association, NewYork, 1975),

102 1-1-riik2, B.S., S.J. yzanski, J.C. Cassel, andS.J. Thdnpin, "Seale for Measurenient ofAttitudes toward Physicians and,PrimaryHealth Care." Medical Care 8, 429-436(1970).

103. Zyzanski, S.J., B.S. Julka, and J.C. Cassel,"Scale for the Measurement of 'Satisfaction'

' With Medical Care: Modifications in Content,r Format and Scoring." Medical Cara 12, 611-

-- T.-

620 (.1974).144. -Franklin, B.J. and S.D. McLemore, "A Scale

for Measuring Attitudes toward StudentHealth Sepices." Journal of 'Psychology 66,143-147 (1967).

1051. Andersen, R., A Behavioral Model of Families'Use of HealU gm-vices (University of ChicagoCenter for Health Adminik %ration Studies,Chicago, Research Series Nos.15, 1968).

106. Suchman, E.A., "Sociomedical VariationsAmong Ethnic Groups." American Journal ofSociology 70, 319-331 (1964):-

107. Reeder', L.G. and E. Berkanovic, "Sociologi-cal Concomitants of Health Orientations: A

Partial Replication of Suchman." Journal ofHealth and Social BehaviOr 14; 134-143 (1973).

108. Geertsen, R., !rt. Klauber, M. Rfndflesh,R.L. Kane, and R. Gray, "A ReexaminationQf Suchman's Views of Social Factors in .Health, Care Utilization." Journal of -Health

'vziict Social Behavior 16, 226-237 (075).Ware, J.1. and M.K. Snyder, "Dimensions ofPatient Attitudes Regarding Doctors andMedical-Care Services." Medical Carr 13,69 682 (1975). ,

11.0. Lebor, J.L., "Consumer Assessments6T theQuality of Medical Care." Medical Care ,12,328-337 (1974). --.Hollingshead, A.B. and F.C. Redlich, SocialClass and Mental Binh's: A Community Study(John Wiley, New Yoram 1958)!Koos, E.L., The Health of Regionville (Colum-bia Vniversity Press, New York, 1954),IReader, G.C., L. Pratt, and M.G. Mudd,"What do Patier Expect from Their floc-tors?" Modern Hospital 89, 8,8-94 (1957).Davis, M.S., "Variations in -Patients' Com-pliance with Doctors' Advice; EmpiricalAnalysis of Patterns of Communication."American Journal of Public Health 58, 274-288(1968).Davis, M.S. and.R.. Von DerLippe, "Dis-charge, Against Medical' Advice: er' Study ofReciprocity in the Doctor-Patient Relation-ship." Social Science and Medicine I, 336-3144 (1968).

Korsch, B.M., E.K. Gozzi, and V. Francis,"Gaps in Doctor-Patient Communication 1.Doctor-Patient fhteraCtion and Patient Satis-faction." Pediatrics 42;1355-87 f` (1968)."Francis, V., B.M. Korsch, and NJ orris,"Gaps in Doctor-Patient Communication. Pa-tients' Response to Medical Advice." NewEngla;id Journal of Medicine 280, 535 -:540(1969).

118. Lipton, H.L..*and B.L. Svarstad, "ParentalExpectations of a Multi-DiscipAipary Clinicfor,Chiklren with 'Developmental -Disahil-ities*,7Journal of Health and-Social Behiivior 15,157-166 (1974).

109.

111.

112.

113.

114.

115.

116.

117.

119. Jackson, j.Q.. and lit.-R":-Greenlick4 "TheWorried-Well Revisited." Medical Care 12,659-667 (1974). .

12Q. Kalmer, H., MerhbertPrOffisionIl AgreeMent Re-lated to Use of a Prepi id_4.f,,tralatoly Care Set-

..ting: An Analysis of Same Relate. d Factors(American Public-Health Association,Chicigo, November 19.4975).

121. Etzv/iler, D,D. and J.R. kohl's "Evaluation ofProgrammed gducation *hone-juvenileDiabetics and Their,Families." Journal of

40

35

ti

$$$--`ter&Slifka? Diabetes Association 21, 967-971

Katz, }LP. and. R.R. Clancy, "Accuracy ofHotneJhroat_Culture Program: A Study of

-Paretii.Participation in Health Care:" Pediat-rice 53; 687-691 (May /974).

123. Avery, C.II L.W. Green, and S. Krieder,"Reducing Emergeilq Visits of Asthmatics:An 'Experiment in Paden,/ Education." Pre-sented as testimony at-hearings of Ie_Presi-dent's.Commitiee on Health Education,

`. Pittsburgh (1972).124. Miller,-1... d J.-Goldstein, "More Efficient

Care :oft betic Patients in a County;Hospital Setting." New England Journal of

. Medicine 286:1388-1391 (1972).125. Rosenberg, S.G., "Patient Education Leads to

-Better Care for Heart Patients." HSMHAHealth Reports 86, 793-802 (1971).

126', American Hospital Aksociation, Readings inHealth Education (American Hospital Associa-

`tion, Chicago,. 1969).127. Aday, L.A. and R. Eichorn, The Utilization of

,Health Services-Indices and Correlates: A RCsearch ,Bibliography, (HSM) 73 -3003 (NationalCenter for Health Services Research,Department of Health; Educatipn, and Wel-fare, 1972).

1

= 56

126. Antonovsky, A. -and H. Hartman, "Delay inihe Detection of Cancer: A Review of the Lit-

. erature." ealth Education Monographs 2,98-12.8 ( 974). 4

1297 Green, .W. and B.J. Roberts, "The Re-... search Lit ure on Why Women Delay in

Seeking Medi Care for Breast Symptoms."Health Educ ion Monogrtsphs 2, 129-177

1974).

130. yzlogoV, E.,' "Effects of Health EducationMethods on Appointment. Breaking." PublicHealth Repott-s 8), 441-450 (1970).

131. Greenlick,;4*1., D.K. Freeborn, T.J.oinbo, et al, "Comparing the 14e of MedicalCare Services by a Medically Indigent and a

.40 f General Membet-ship Population in a Cod-.Prehengve Prepaid Group Practice Pro-gram." Medical Cari.10, 187-200 (1972)..

132. Purtado, M.R. Greensick, and T.J.Coloinbo, "Determinants.pf Medical Ca-reOtifiation: Failure to Kee k Appointments."Medical Care /89-198- (1973). '

'Sons; ac., Q. Chuaqui,. C. Jimenez, et 4'iBroken4Appointinents at a Comprehensive.Clfilic for. ten." Me4dical Cate 6,1,332-339(July 1968 .

Sussman;- Caplan, M.R. Haig, etal, The Walking Patient: A Study in OutpatientCare (The Press of Western Iteserve 'Univer-sity, Cleveland; 1967).

.

135. Caldwell, J.F., S. Cobb, M.D. Dowling, .et al, .

"The Dv:motif Problem in AntilrpertensiiieTreatment." Journal of Chronic Diseases 22,579-592 (1970). .

136. Finnerty, F.A., Jr., E.C. Mattie, and F.A,.Finnerty, 111. "Hypertension in the InnerCity. 1. Analysis of Clinic Dropouts." tircula-lion 47, 73-75 (1973).

137. Williams, A.F. and H. Wechsler, "Interrela-tionships of Preventive Actions in Health andOther Areas." Health Services,Reports 87,969-976 (1972).

138, Green, 1.W., Status Identity and PreventiveHealth Behavior, Pacific Health EducationReports No. 1 (University of California, Ber-keley, 1970).

139. Steele, J. and W.H. McBroom-, "Conceptual:;.and Empirical Dimensions of Health Be-

t* havior." Journal of Health and Social Behavior13, 382-392 (1072):

140. Rosenstocl, LM,, '"The Health Belief Modeland-Preventive Health Behavior," Health.Education Mitnographs 2, 354-386. (Winter1974).

141. Becker, M.H., "The Health Belief Wail andSick Role Behavoir." Health Education Moito-

jo graph 2, 409-419 (1974)r4.2. Kasl, S.V., "The 1-14th Belief Model and

Behavior Related to ronic Illri Health'Education Monographs 2, 433-454 (1974)..

.143. Mitchell, 1.11., "Compliance.with _MedicalRegimens: An Annotated Bibliography."Health Education Motiograph.i 2, 754:.87 (1974).

144, GreeiLy.W., "Site- and Symptom-RelatedFactors in the Secondary Prevention ofCancer." In Applying Behavioral Sciences ito,Cancer Control, B. Fox, Ed. (National CanterInstitute, Bethesda, 1975). .

145, EnelOw, A. and J.B. Henderson, Eds., Apply-ing Behavioral Sciences to Cardiovascular Risk(AmeriCan Heart Association, New York,1975).

146. Chen, J.L., N. Moore, P.S eI *cil,

"DirSodium Cromoglycat : Ntlii-Com-. pound for the Prevention of Examrbatioitsof Asthma." Journal of Allergy 43,_ 89-100 4

, (1969):

I

'14

41 t $ ,0.

S

4

f

...-

List ofconference participants

Dr. Gerald RosenthalDifiar, National Center for Health Services Re-

HRAJDHEW

Dr. George A. SilverYale University School of Medicine

Dr: Lawrence W. GreenSchool of Hygiene and Public HealthThe Jot= Hopkins University

,Dr. Michael Samuels

. Bolinas, California

Dr. Mary Ann LewisCenter for Health ',

University of California, Los Angeles

Dr. Keith SehnertGeorgetown University

Dr. Ronald M. AndersenCenter for Health Administration StudiesUniversity of ChicagoMs. Gretchen' V. FlemingCenter for Health Administration StudiesUniv tiity of Chicago

. Eva J. SalberDepartment of Community Health ices

' Duke University Medical Center -N4Q0

Dr. Alfred KatzSchool of Public #ealth

. University of California

Ms. Sllie,AdamsUnited States Senate StaWashington,

Dr. Lowell LevinYale University School of Medicine

Dr. Lee SechrestDepartment of PsychologyFlorida State UniversityProfessor. Reginald WellsAMY at Stoneybrook

**.

Dr. Jan HowardDepartment of Anthropology /SociologyVirginia o monwealth University

A

-

Mr. Edrard RoccellaThe University of Michigan Medical SchoolAnn Arbor, MklziganMr. Maurice GlatzerBureau of Health Education, CDC, DHEWMrs. Mona MitnickOffice of the Assistant Senetiry for Plarring and

Evalu /HealthDHEW

Mr. Ed Roy RossDHEW, Reg on XSeattle, yhshington,Mr. Sheridan R. WilliamsHeilth Services Research and Development CenterThe Johns Hopkini UniversityMr: Dohn RushingSocial Analysis BranchDivision of Health rvices Research and Analysis:"

NCHSR

Dr. Jerry WestonAssistant to the DireCtorDHSRA, NCHSR

Mr. William LohrHealth Services ResearchDHSRA, NCHSR.

Mr. John.GallicchioSocial Analysis BranchDHSRA, NCHSR

Mr. Arciter CopleyActing DirectorDHSRA, NCHSR

Mr. Franklin B. CaffeeActing Chief, Social' Analysis BranchDHiSRA, NCHSR

Mr. Gerald SparerActing DirectorDivision of Health Systems Design. and Develop-

. ment and Evaluation, NCHSR

Dr. Robert ThornerDivision of Health Systems Design and Develop-

ment, NCHSR

1at

Xs: Elinor WalkerDHSDD, NCHSR.,

Mr, James R. UllomDHSDD, NCHSR ,

, .

Mrs. Edith G. Robins. Division of Lodg Tern.; Care, NCHSR

Dr. Kathleen, ltfigStaff Assistant for Consumer Affairs, NCHSRMrs. Bettha D. Atelsek

'Director, Division of Health Services Evaluation,NCHSR

Dr. Betty LockettBureau of Health Manpower, HRAMs. Patricia Shonlibi -Bureau of Health Manpower, HRA

-Mr. Lionel FernandezChief, Program Development Branch.office of Health Resources Opportunity, HRA

Invited, but unable to attend:

Mr. Rudy SalinasCommunity Health FoundationLos Angeles, California

Dr. Vincente NavarroSchool of Hygiene and Public HealthThe Johns Hopkins UniversityDr. Howard Kahn=Health Services Research and Development CenterThe Johns Hopkins UniverfityDr. John ClarkDeputy DirectorDHSRA, NCHSR

Mrs. Bernice HarperDirectorDivision of Long Term Care, NCHSRMr. Daniel Zwick, DirectorOffice of 'Program Evaluation and Legislation'

-Health Resources Administration, USPHSMs. Wilma Dean HenryBureau of Health EducationCenter for 'Disease Control, USPHSDr. David Kindig, Deputy DirectorBureau of Health Manpower, HRA, USPHSDr. Sidney Wolfe, DirectorWashington Health Research GroupDr. h-win-M. RosenstoclSchool of Public HealthUniversity of Michigan

43

Current NCHSR-publicailas

The fallowing National Center foeHealth Serv-ices Research publications are of interest to ,thehealth corn:I:dimity., Copies are available on requestto NCHSR, Office of Scientific and Technical In-formation, 8700 East-Wes( Highway, Room 7-44,Hyattsville,, MD 20782 (tel.: 301/436-8970). Mailrequests will be facilitated by enclosure,of a self-adhesive mailipg label. Note: numbers in par-entheses are order numbers for the NationalTechriical Information Service, Springfield, VA

_22161, (tel.:, e03/557-4650).

Ressarch'Management

The Research, Management Series desiribes pro-grammatic rather than technical aspects of theNCHSR research effort. InfOrmadon is preseitiedon the NCHSR- goals, research objectives, andpriorities, in addition, this series contains adminis-trative information on funding, lists ofgrants andcontracts, and special prograits. Puhlir_ations inthis series are intended to bring baskinformationon NCHSR and its programs tb researshplanners,administrators, and others who are in61ved withthe allocation of research resources. -

e(HRA) 76-3138 The Program in Health Servicakr. arch (Re-vised 91761 _

(HRA) 77-3158 Summary of Grants aS011bontracts June20,1976

(HRA) 77-3167 Emergency 1,Siglical Services, Systemssearch Projects (Active as of Julys 30, 1976)-(Pri 264 407)

) 77-3179 Research on the Priority issues of the Vationafnter for Health Serfces Research, Grants and Contracts.A0-

five on June 30, 1976

VA)VA) 77.--343 Summary of Recent Studies in Health Service,CY 1976 (in preparalir)

` \ Policy ResearchThe Policy Research-Series describer findings

from the research program of major significanceforpolicy issues of the Moment. These papers areprepared by members:of the staff of NCHSR or byindependent ifivestigatbrs.The series is intendedspecifically to inforni tliOse.in the public and pri-vate sectors who must consider, design; and im-

_plement policies affecting the delivery of healthservices. -

(HRA) 7773182 Controlling the Cost of Health Care

tl

1

Resench DigestsThe Rr rich Digest Series .provides overviews, of

it significant research_ supported by NCHSR. Theseries describes either ongoing or completed proj-ects directed toward high priority health servjcesproblems. Digests are prepared by the principalinvestigators performing the research, in collab-oration with NCHSR staff. The series is intendedfor an interdisciplinary audience of health servicesplanners, administrators, legislators, and others-who make decisions. on research applications.(HRA) 76 -3144- Evaluation of a Medical litformation System in aCommunity Hospital (PB 284 353)

(HRA) 76-3145Somputer-Stored Ambulatory Record (COS-AR) .

(PIRA) 77-3160 Program Analysis of Physician Extender Aldbgorithm Projects

(HRA) 77-3161 Changes in the Costs of Treatment of Selectedillnesses, 1951-1964-1971 (HRP 0014598)

((HRA)} 77-3163 Impact of State Gertificate -of -Need Laws onHealth Care Costs aneptifizedion (PS 264 352) .(HRA) 77-3164. An Evakiation of Physician Assistants n Diag-nostic Radolopy (PB 266 507)

HRX) 77-3166 Foreign Medical Graduates: A Comparativitof State Ucensure Policies (PS 265 233) -

(HRA) 77-3169 Cost Data Reporting System for Nursing

(HRA) 77-3173 Nurse ?ractitioner and .?hyslcian AssistantTraining and Depioymerit

77-3177 Automation of the Problem- Oriented Medical

(HRA) 774171 Analyst] of Physician Price and Output Deci-sions

41W(HRA) 77-3172 Systems of Reimbursement for Long -TermCare (in preparation)

(HRA) 77 -31 87 Measurement 'Standard; for Nursing Care (Inpreparation)

(HRA) 77-3In Two Slate's of Fo Years of Faders! Policy

1'90 Deliverin $,HEalth Car; to°Chlidren. The Ef-fects

Homes (in preparation)

Researdh Reports ..

The Research &part Series provides significant, re-search reports in their entirety upon the comple-tion of the project. Research Reports are de-veloped by the principal investigators who con-.

44,

-39

ducted the research, and are directed to selectedusers of health services research as part of a con-

ginning NCHSR effort to expedite the dissemina-tion of new knowledge resulting from its projectsuPPQrt- t

)PB

76-0143 Computer -Based Patient Lionitonng Systems266 S08)

4HRA) 77-3152 How Lawyers Handle Medical MalpracticeCases (HRP0014313)

(HRA) 77-3159 Arinalysts of the Southern Cardornia Arbitra-tionect. January 1966 through June 1975(HRP 0012466)

0-111A) 77:3159_ Statutory Provisions for. Binding Arbitration ofMedical mairxactka Cases (PB 264 409)

HRA) n-ete4 1960 and 1970 Hispanic Population of theby County

(HRA) 77-3188 Decnonstratir and Evaluation of a Total Hospi-tal Information System (in preparation)

(HRA) 77-3189 Drug Coverage under National Health Insur-ance:The Policy Options

IHFIA) 77-3191 IYeusion of Technological Innovation in Hospi-tals: A Case Study of Nuclear Medicine fm preparation)

Research Proceedings

The Research Proceedings Series extends the avail-`ability of dew research announced at conferences,*symposia and seminars sponsored or supported byNCHSR. In addition to the papers presented atkey meetings, publications in this series includediscussions and responses whenever possible.. Theseries helps meet the information needs of healthServices piroviders anCothers who require direct'attests to concepts and ideas evolving from the ex-change of research results.

MR/0 77,-313CWornen and Their Health: Research !mak:a-lba fora-kew Era (PS 264 359)

344PIR)

A) 76-3150-intermouritaln Medical Malpractice (PS 268.

(HRA) 77-3154 Advances in Health Sursrey Research Methods

(HRA) 77-3186 International eohference. on Drug and Phar-maceutical Services Reimbursement ,

The Research Sustnscuy Series provides rapid accessto significant results of NCHSR-sukiported re-search projects. The series presents executive

summaries prepared by the investigators near thecompletion of the project. Specific findings arehighlighted in a more concise form than in thefinal report. The series is intended for health serv-ices administrators, planners, and other researchusers who require recent findings relevant to im,mediate problems in health services.

(HRA) 77-3162 Summary of Recent Studies in Health ServicesResearch (P8 266 460)

(HRA) 77 -3176 Ouakt; of Medical Care Assessment' its Oukcome Measures (in preparation)

cram(HRA) 77-3178 Algorithm

)to Train, Support, and Evaluate

ecks (Id preparation

NCHSR Program Solicitations(HRA) 77-3180 NCHSR Grant Solicitation. Health Services Pol-icy Analysis Center

145

BlelLIOGRAP HID DATASHEET

1. Report No.NCHSR 77 -154

. .3. Recipient's Accession No.

-

4. Title and Subtitle .

CONSUMER SELF-CARE .IN HEALTH; CONFERENCE HELD T DULLES AIRPORT

MARRIOTT, FAIRFAX COUNTY; VIRGINIA, MARCH 24-26, 1976; NCHSR

Research Proceedings Series

5. Report Date

August 1977.

6. .

.

7. Autbor(s)John O. Gallicchio - /

8. Performing Organization Rept.No. ___

9. Performing Organization Name apd Address

National Center for Health ServiAes Research, HRA, DREW

3700 East-West Highway, Room 7-44 (STI)Hyattsville, MD 20782 .

10. Proiect/Taskirork Unit No.___

11. Contract /Grant No..

'In-house

12. Sponsoring Organization Name and Address

DHEW, PHS, HRA, National Center for Health Services Research

3700 East-West Highway, Room 7-44 (STI)Hyattsville, MD 20782.

(Tel.: 301/436-8970)

1.3. Type of fleport lc PersodCoo red ngs

March 24-26, 1976

1A=

15. Supplementary Notes

DHEW Pub. No. (HRA) 77-3181.

16. Abstracts Consumer self-care -in health is a growingcreasingly function for themselves to prevent, detect,

promote good health in a manner which supplements

vices. The movement can be traced to sociarand

changes in nursing theory, and the growth of self-helpgroups

Feminist movement, and the growth of women's health

lectives have been influential in the popularizationees have recommended a broad range of new research

-an4-health care provider attitudes and practicesthe health care process; and the demonstration of

tion of existing self-care programs and theory .in

faction. The conferees also discussed ethical issues

quality of self-care, and "at-risk" populations.

existing programs. the history and Tank af thP

movement wherein lay persOns in-and treat health problems, and._

or substitutes for professional serhealth legislation of the 1960s,

(also the more recentcenters and feminist therapy col-of self-care in health). Confer-

on the topic: a survey of consumerregarding more consumer involvement in

new self-care theory and the evalua-

terms of 'Costs, efficiency, and-satisregarding research risks, the

Appended are four papers descrille_mavomenf, and inferences concerning

Abstract (cont.)

.

.-.,

-

17. kr),-*,:m4rre6-90tm11-447cr.7"'"F' No. 16..

consumer's desire for increased self-care.

\

-.

.,

..

17b. Identifiers;Open-Ended Terms

,

Health services researchSelf-Care conferen6onsumer self-care

,

17c. COSATI Field Group

18. Av i bitty Statement-ele sable to the

ech IcatIaformationTel.: 4 3/557-4650)

'

public. Available from National '

Service, Springfield, VA22161.

19. Security Class (ThisReport)

uNc.LASSIFigo

21. No. of PagesList. 40

XL Security Class (ThisPage

UNCLASSIFIED__ ____--..---

22. Price .

.

"vow wrys..35 (wry. 10.7 ;DORSED BY A.VS1 AND .U

Mb