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Bradford W. Hesse, PhD Chief, Health Communication and Informatics Research Branch The Role of Information Technology and Health Communication in Health Care Delivery: The Case of Cancer

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Bradford W. Hesse, PhDChief, Health Communication and Informatics Research Branch

The Role of Information Technology and Health Communication in Health Care

Delivery: The Case of Cancer

Jessie Gruman, Pres. CFAH

In MemoriamDecember 7, 1953

- July 14, 2014

“The millions of dollars of biomedical research … aimed at a disease that was costing 10’s of thousands of dollars to treat and it ultimately relied on the actions of a skinny, weak, scared 20-year old to have its impact.”

Jessie Gruman

“Those of us with multiple chronic conditions may consult many physicians in the course of a year. Last year, I saw 11. Not one of my doctors has ever communicated directly with another… I am the sole arbiter of who gets what information in what format and when.”

Jessie Gruman

NoMa&erWhere:TheMovie Dr. Kevin B. Johnson

Filmmaker

Question:

How do we connect our systems for patients — and on behalf of patients — to ensure reliable, proactive, and error-proof communications?

1996 - 2016Rise of the “Connected

Patient”

“Almost half of the Internet users in 1997 reported looking for health information”

-- Rice & Katz

Source: Rice RE, Katz JE. The Internet and health communication : experiences and expectations. Thousand Oaks, Calif.: Sage Publications; 2001.

Search Term % Using TermDepression 19%Allergies/sinus 16%Cancer 15%Bipolar disorder 14%Arthritis/rheumatism 10%High blood pressure 10%Migraine 9%Anxiety disorder 9%Heart disease Sleep disorders

8% 8%

Terms Searched

Source: Rice RE, Katz JE. The Internet and health communication : experiences and expectations. Thousand Oaks, Calif.: Sage Publications; 2001.

Search Term % Using TermDepression 19%Allergies/sinus 16%Cancer 15%Bipolar disorder 14%Arthritis/rheumatism 10%High blood pressure 10%Migraine 9%Anxiety disorder 9%Heart disease Sleep disorders

8% 8%

Terms Searched

Source: Rice RE, Katz JE. The Internet and health communication : experiences and expectations. Thousand Oaks, Calif.: Sage Publications; 2001.

HealthInforma6onNa6onalTrendsSurvey(HINTS)hints.cancer.gov Funded 2001

Wherewouldyouprefertogoforcancerinforma6on?

Source: Hesse BW, Nelson DE, Kreps GL, et al. Trust and sources of health information: the impact of the Internet and its implications for health care providers: findings from the first Health Information National Trends Survey. Arch Intern Med. Dec 12-26 2005;165(22):2618-2624.

Wheredidyougoforcancerinforma6on?

Source: Hesse BW, Nelson DE, Kreps GL, et al. Trust and sources of health information: the impact of the Internet and its implications for health care providers: findings from the first Health Information National Trends Survey. Arch Intern Med. Dec 12-26 2005;165(22):2618-2624.

See: Rutten LF, Moser RP, Beckjord EB, Hesse, BW, Croyle RT. Cancer Communication: Health Information National Trends Survey. Washington DC: National Cancer Institute. 2007.

*51.6% looked for self *45.7% looked for others

2003*

Lila Rutten Mayo Clinic

Rick Moser NCI

Ellen Beckjord U of Pittsburgh Med

Diffusionofonlinehealthinforma6onseeking

See: Rutten LF, Moser RP, Beckjord EB, Hesse, BW, Croyle RT. Cancer Communication: Health Information National Trends Survey. Washington DC: National Cancer Institute. 2007.

*51.6% looked for self *45.7% looked for others

2003*2005*

*58.4% looked for self *59.4% looked for others

Lila Rutten Mayo Clinic

Rick Moser NCI

Ellen Beckjord U of Pittsburgh Med

Diffusionofonlinehealthinforma6onseeking

Source: Hesse BW, Moser RP, Rutten LJ. Surveys of physicians and electronic health information. N Engl J Med. Mar 4 2010;362(9):859-860.

HINTSTrends:NewEnglandJournal2010

Lila Rutten Mayo Clinic

Rick Moser NCI

Source: Hesse BW, Moser RP, Rutten LJ. Surveys of physicians and electronic health information. N Engl J Med. Mar 4 2010;362(9):859-860.

HINTSTrends:NewEnglandJournal2010

Lila Rutten Mayo Clinic

Rick Moser NCI

Source: Hesse BW, Moser RP, Rutten LJ. Surveys of physicians and electronic health information. N Engl J Med. Mar 4 2010;362(9):859-860.

HINTSTrends:NewEnglandJournal2010

Lila Rutten Mayo Clinic

Rick Moser NCI

Source: Hesse BW, Moser RP, Rutten LJ. Surveys of physicians and electronic health information. N Engl J Med. Mar 4 2010;362(9):859-860.

HINTSTrends:NewEnglandJournal2010

Lila Rutten Mayo Clinic

Rick Moser NCI

TrendsTowardConsumerEngagementCon6nuetoClimb

Source: Hesse BW, Greenberg AJ, Rutten LJ. The Role of Internet Resources in Clinical Oncology: Promises and Challenges. Nature Reviews; Clinical Oncology (in press).

Lila Rutten Mayo Clinic

Allie Greenberg Mayo Clinic

Tracking&Adjus6ngHP2020Goals:AccesstotheInternet

Source: Hesse BW, Gaysynsky A, Vieux S, et al. Meeting the Healthy People 2020 Goals: Using the Health Information National Trends Survey to Monitor Progress on Health Communication Objectives. Journal of Health Communication. 2014;19(ISS12).

Tracking&Adjus6ngHP2020Goals:Broadband&Mobile

The President’s Cancer Panel

2014 - 2016

Members

Barbara K. Rimer, DrPH Univ.ofNorthCarolinaatChapelHill

Hill Harper, JDCancerSurvivor,Actor,andBest-SellingAuthor

Owen N. Witte, MDUniversityofCaliforniaLosAngeles

Commission and Charge

Commissionedby1971CancerAct.• ToreviewstatusoftheNationalCancerProgram,

• Toidentify“gaps”inneedofattention,

• ReportdirectlytothePresidentoftheUSwithfindings.

2014-2015 Series

ConnectedHealth:ImprovingPatients’Engagementand

ActivationforCancer-RelatedHealthOutcomes

Primary Prevention Loss to Follow-up:e.g., “70% smokers visit healthcare, but few receive adequate follow-up,” Michael Fiore (2013)

Communica6onErrorsinCancerCare

Primary Prevention Loss to Follow-up:e.g., “70% smokers visit healthcare, but few receive adequate follow-up,” Michael Fiore (2013)

Secondary Prevention:Failure to Screene.g., 56% of late stage cervical cancer cases in community hospital failed to screen (Taplin)

Secondary Prevention:Loss to Follow-upe.g., 7% labs, 8% image loss for abnormal findings at 4 weeks (Smith et al, 2013)

Communica6onErrorsinCancerCare

Primary Prevention Loss to Follow-up:e.g., “70% smokers visit healthcare, but few receive adequate follow-up,” Michael Fiore (2013)

Secondary Prevention:Failure to Screene.g., 56% of late stage cervical cancer cases in community hospital failed to screen (Taplin)

Secondary Prevention:Loss to Follow-upe.g., 7% labs, 8% image loss for abnormal findings at 4 weeks (Smith et al, 2013)

Treatment: AdherenceKondryn et al. (Lancet Onc, 2011): 63% of teens & young adults struggle with adherence to cancer Rx regimens.

Communica6onErrorsinCancerCare

Primary Prevention Loss to Follow-up:e.g., “70% smokers visit healthcare, but few receive adequate follow-up,” Michael Fiore (2013)

Secondary Prevention:Failure to Screene.g., 56% of late stage cervical cancer cases in community hospital failed to screen (Taplin)

Secondary Prevention:Loss to Follow-upe.g., 7% labs, 8% image loss for abnormal findings at 4 weeks (Smith et al, 2013)

Treatment: AdherenceKondryn et al. (Lancet Onc, 2011): 63% of teens & young adults struggle with adherence to cancer Rx regimens.

Symptom ManagementTwo month survivor benefit for late stage lung cancer patients with connected “clinician reports” (Gustafson, et al 2009)

SurvivorshipCommunication problems blamed for missed recurrence, missed new cancers, and secondary effects (IOM Lost in Transition, 2005)

Communica6onErrorsinCancerCare

JointCommissionhighlightsroleofcommunicationdiscontinuities

❑ Totalnumberofpreventablemedicalerrorsfromallsourcesexceeds17millioneachyear

❑ JointCommission’sSentinelDatabasereports70%ofallreportedeventshadcommunicationasrootcause

http://www.jointcommission.org/assets/1/18/Root_Causes_by_Event_Type_2004-2014.pdf

Accoun6ngforTwoTypesofError

Errors of Commission: Doing something wrong (root cause of detectable errors)

Accoun6ngforTwoTypesofError

Errors of Commission: Doing something wrong (root cause of detectable errors)

Errors of Omission: Failing to do something right (e.g., Pap failure - leads to more insidious consequences)

Stressesthatwilllikelyexacerbatefractures,obstructprogress

http://www.iom.edu/Reports/2013/Delivering-High-Quality-Cancer-Care-Charting-a-New-Course-for-a-System-in-Crisis.aspx

StressesonHealthcare❑ Agingdemographics

❑ Increasingchronicdisease

❑ Complexityincare

❑ Increasefordiseasesinremission

❑ Shrinkingworkforce

❑ Riseintreatmentcosts

http://www.iom.edu/Reports/2013/Delivering-High-Quality-Cancer-Care-Charting-a-New-Course-for-a-System-in-Crisis.aspx

CreatingaConnectedCareSystemforPatients&Providers(ASCO)

Creatingasystemthatis:❑ Predictive❑ Preemptive❑ Personalized❑ Participative

http://www.iom.edu/Reports/2013/Delivering-High-Quality-Cancer-Care-Charting-a-New-Course-for-a-System-in-Crisis.aspx

CreatingaConnectedCareSystemforPatients&Providers(ASCO)

FourPrimaryDimensionsofanIdealFuture

PersonalHealth

Information&DataSharing

Person&Family

CenteredCare

Devices,Sensors,&

Apps

NationalHealth

InformationInfrastructure

❑ Personalaccesstophysiologicandclinicaldatacontributestoacultureofhealthandbetterselfmanagement

❑ “DataAltruism:”researchparticipationatamassivescale

❑ PatientGeneratedHealthData(PRO’s,sensors)informpractice

PersonalHealth&DataSharing

❑ Patientandfamily-centricsystemoncologyandprimarycaresystem

❑ Patientsreportfeelingmore“connected”totheircancercareproviders-helpjustaclickorphonecallaway

Person-andFamily-CenteredCare

❑ Connectedtechnologiescreateubiquitousaccessopportunitiesacrosspopulations&acrossgeographicboundaries

❑ Behavioralsupportbuiltintodecisionalarchitecturesmakingevidence-basedmedicine&healthylivingtheeasychoices

Devices,Sensors,&AppsBuiltintotheHealthEnvironment

❑ONCreachesits2020goalofaninteroperableinfrastructurefordataflowcontrolledbyindividuals

❑ Cancerprevention,control,treatment,andsurvivorshipimproves,withgreaterconnectivityandfewerdiscontinuities

NationalHealthInformationInfrastructure/Interoperability

Bringing it All Together: Oncology Informatics

*Source: Jemal, A., Siegel, R., Xu, J., & Ward, E. Cancer statistics, 2010. CA Cancer J Clin, 60(5), 277-300.

John Seffrin, CEO American Cancer Society

“We know what kinds of things need to be done to increase the number of people who

survive from 350 per day to1,000.”Lives saved (annually): 1975 to 2005

How can we connect systems?

RichardSchilskyChiefMedicalOfficer,ASCO

1. The Learning Oncology System

RichardSchilskyChiefMedicalOfficer,ASCO

1. The Learning Oncology System

AprilOhNationalCancerInstitute

2. Reducing Disparities, Pop Health

RichardSchilskyChiefMedicalOfficer,ASCO

1. The Learning Oncology System WarrenKibbeNationalCancerInstitute

3. Precision Medicine

AprilOhNationalCancerInstitute

2. Reducing Disparities, Pop Health

RichardSchilskyChiefMedicalOfficer,ASCO

1. The Learning Oncology System WarrenKibbeNationalCancerInstitute

3. Precision Medicine

AlexKristVirginiaCommonwealth

4. Patient Engagement

AprilOhNationalCancerInstitute

2. Reducing Disparities, Pop Health

RichardSchilskyChiefMedicalOfficer,ASCO

1. The Learning Oncology System WarrenKibbeNationalCancerInstitute

3. Precision Medicine

KatherineKimUCCaliforniaDavis

5. Point of Need

AlexKristVirginiaCommonwealth

4. Patient Engagement

AprilOhNationalCancerInstitute

2. Reducing Disparities, Pop Health

Chapters6-10

GlenMorgan,PhD

Chapter 6

StephenTaplin,MDMPH

Chapters6-10

GlenMorgan,PhD

Chapter 6 Chapter 7

StephenTaplin,MDMPH

Chapters6-10

GlenMorgan,PhD

BradfordHirsch,MD

AmyAbernethy,MD,PhD

Chapter 6 Chapter 7 Chapter 8

StephenTaplin,MDMPH

Chapters6-10

GlenMorgan,PhD

BradfordHirsch,MD

AmyAbernethy,MD,PhD

EllenBeckjord,PhD,MPH

LoriDuBenske,PhD

Chapter 6 Chapter 7 Chapter 8

Chapter 9

Chapter 10

Chapters11&15DataVisualiza:on&Human

Percep:on

Chapter 11

EberechukwuOnukwugha,PhD

BenShneiderman,PhD

CatherinePlaisant,PhD

Chapters11&15DataVisualiza:on&Human

Percep:on

Chapter 11

EberechukwuOnukwugha,PhD

BenShneiderman,PhD

CatherinePlaisant,PhD

Chapter 15

ToddHorowitz,PhD

Chapters12-13BehavioralInforma:cs&

Communica:onChapter 12

DavidAhern,PhD

Chapters12-13BehavioralInforma:cs&

Communica:onChapter 12

DavidAhern,PhD

Chapter 13

BradfordHesse,PhD

Chapters14AdvancesinSurveillance

Chapter 14

LynnePenberthy,MDMPH

Chapters14AdvancesinSurveillance

Advanced Natural Language Processing

Chapter 14

LynnePenberthy,MDMPH

Chapters16-19TheNewEcosystem

16. Health 2.0: Smart Patients

Chapters16-19TheNewEcosystem

16. Health 2.0: Smart Patients

17. Crowdsourcing: Patients Like Me

Chapters16-19TheNewEcosystem

16. Health 2.0: Smart Patients

17. Crowdsourcing: Patients Like Me

18. Big Data: New Methods

Chapters16-19TheNewEcosystem

16. Health 2.0: Smart Patients

17. Crowdsourcing: Patients Like Me

18. Big Data: New Methods

19. Cyberinfrastructure: MD Anderson

Chapter20:• BrightSpots• PostHITECHworld• Buildingthefuturetogether

Final Thoughts

ThePresident’sCancerPanelReportDueoutinSummer2016

ThePresident’sCancerPanelReportDueoutinSummer2016

Recommendations

TheFCCTackles“Connec6on”asCrucialInfrastructureinHealth

Source: https://www.fcc.gov/about-fcc/fcc-initiatives/connect2healthfcc

TheFCCTackles“Connec6on”asCrucialInfrastructureinHealth

Source: https://www.fcc.gov/about-fcc/fcc-initiatives/connect2healthfcc

Source: Gee PM, Greenwood DA, Paterniti DA, Ward D, Miller LM. The eHealth Enhanced Chronic Care Model: a theory derivation approach. J Med Internet Res. 2015;17(4):e86.

NeedNewModelsofConnectedCare

A “Moon Shot” Metaphor: Using Technology to Propel/ Protect People

Connected Systems for Patients as the

Guidance System

Thank You