Using routinely collected Using routinely collected datadata

Dr Colin FischbacherDr Colin Fischbacher

Information Services DivisionInformation Services Division

NHS National Services, NHS National Services, ScotlandScotland

Talk outlineTalk outline

Potential role of routine dataPotential role of routine data The current situationThe current situation

• Primary carePrimary care• Secondary careSecondary care• Other sourcesOther sources

Some conclusionsSome conclusions

Why use routine data?Why use routine data?

Considerable existing investment in Considerable existing investment in data collectiondata collection

Very large datasets with universal Very large datasets with universal coveragecoverage

Marginal cost of adding ethnic group Marginal cost of adding ethnic group is relatively smallis relatively small

May increase profile of ethnic health May increase profile of ethnic health inequalitiesinequalities

The vision: a routine system for The vision: a routine system for collecting ethnic informationcollecting ethnic information

Based on self-definitionBased on self-definition Collected with informed consentCollected with informed consent Agreed categories, compatible with censusAgreed categories, compatible with census Collected once (probably in primary care) Collected once (probably in primary care)

and transferable using standard data formatand transferable using standard data format Collected by fully trained staffCollected by fully trained staff Records everything needed for appropriate Records everything needed for appropriate

care (origin, religion, language, other?)care (origin, religion, language, other?)

What could this provide?What could this provide? monitoring uptake of servicesmonitoring uptake of services targeting servicestargeting services ensuring care is appropriateensuring care is appropriate policy developmentpolicy development performance managementperformance management

DOH. Collecting ethnic category data. Oct 2001

Drivers in ScotlandDrivers in Scotland

supporting patient focussed caresupporting patient focussed care demonstrating compliance with legal demonstrating compliance with legal

obligationsobligations investigating ethnic variations in investigating ethnic variations in

health and health care provisionhealth and health care provision

Recent developments in Recent developments in ScotlandScotland

Fair for all auditFair for all audit ISD’s Equality and Diversity ISD’s Equality and Diversity

Information ProgrammeInformation Programme Diversity audit of health databasesDiversity audit of health databases

The current situation:The current situation:primary careprimary care

information on ethnicity not collected information on ethnicity not collected in Scotlandin Scotland

largely incomplete in England?largely incomplete in England? some local efforts based on some local efforts based on

mailshotsmailshots• as in Liverpool – 58% codedas in Liverpool – 58% coded• but very intensive (~70p/patient)but very intensive (~70p/patient)

Issues in primary careIssues in primary care

ethnicity as a clinical condition rather ethnicity as a clinical condition rather than a demographic characteristicthan a demographic characteristic

ensuring both standardisation and ensuring both standardisation and flexibility for data collectionflexibility for data collection

availability of standard Read codesavailability of standard Read codes ability to share dataability to share data

The 2006 GMS contractThe 2006 GMS contract

Includes 1 point in organisational Includes 1 point in organisational domain for the collection of ethnic domain for the collection of ethnic group informationgroup information• . . . but does this include electronic . . . but does this include electronic

recording?recording?• . . . and do GP’s think it worthwhile?. . . and do GP’s think it worthwhile?• . . . effect on awareness of the issue?. . . effect on awareness of the issue?

The current situation:The current situation:secondary caresecondary care

Field for ethnicity in Scottish SMR Field for ethnicity in Scottish SMR databases since 1996databases since 1996• recorded in only 9.2% of hospital episodes recorded in only 9.2% of hospital episodes

(46.2% in one Ayrshire acute trust)(46.2% in one Ayrshire acute trust)• until 2004 used ethnic grouping that did not until 2004 used ethnic grouping that did not

match the Census categoriesmatch the Census categories• ““Although not mandatory it is strongly Although not mandatory it is strongly

recommended that these items be completed recommended that these items be completed whenever the information is available”whenever the information is available”

The current situation:The current situation:secondary caresecondary care

Ethnic monitoring in EnglandEthnic monitoring in England• workforce (1991) patients (1995)workforce (1991) patients (1995)• guidelines, training for staffguidelines, training for staff

Completeness of HES variableCompleteness of HES variable

High HES completenessHigh HES completeness

Blackledge (BMJ 2003) reported Blackledge (BMJ 2003) reported higher incidence of heart failure higher incidence of heart failure among South Asians in Leicester among South Asians in Leicester using HES datausing HES data

based on “self reported coding” for based on “self reported coding” for ethnicity; coverage “thorough”; ethnicity; coverage “thorough”; validated using name search validated using name search methodsmethods

Lower HES completenessLower HES completeness

London Health Observatory review of London Health Observatory review of data 1997/8 – 2000/01 found:data 1997/8 – 2000/01 found:• 37-38% ethnic group “not known”37-38% ethnic group “not known”• Valid codes in around 66% of casesValid codes in around 66% of cases

http://www.lho.org.uk/Download/3nhjq2aa2pnxxbmora3szquu/live/8907/EHIP_Update_4.doc

Ethnicity data Ethnicity data inincompleteness in HES (%) by completeness in HES (%) by Government Office Regions, England, 2003/04Government Office Regions, England, 2003/04

England 36

NE 19

NW 33

Y&H 45

EM 30

WM 25

EE 42

L 34

SE 47

SW 42

Source:Indications of Public Health in the English Regions – Number 4: Ethnicity and Health. Association of Public Health Observatories, Oct 2005

Issues with HESIssues with HES

How are the data collected?How are the data collected? Can we ensure self-definition?Can we ensure self-definition? How often do systems default to How often do systems default to

“white”?“white”? How well trained are staff?How well trained are staff? Is the situation changing?Is the situation changing?

Other databasesOther databases

Cancer registration (ethnic group available Cancer registration (ethnic group available in 18% in Scotland)in 18% in Scotland)

Child health (CHI database in Scotland) – Child health (CHI database in Scotland) – median 22% completemedian 22% complete

Health Visitor/District Nurse databasesHealth Visitor/District Nurse databases• Lothian database said to be “100% complete”Lothian database said to be “100% complete”

Scottish Birth RecordScottish Birth Record Diabetes registersDiabetes registers GUM clinics (94% recorded)GUM clinics (94% recorded)

Issues for other databasesIssues for other databases

All incompleteAll incomplete Few or none match current census Few or none match current census

categoriescategories

Another “routine” sourceAnother “routine” source

Two health questions in the CensusTwo health questions in the Census

Some other issuesSome other issues

Data standards (NCDDP in Scotland)Data standards (NCDDP in Scotland)[www.datadictionary.scot.nhs.uk][www.datadictionary.scot.nhs.uk]

Ambivalence among cliniciansAmbivalence among clinicians Persistence of race as a clinical issue, Persistence of race as a clinical issue,

eg in relation to haemo-eg in relation to haemo-globinopathies and diabetesglobinopathies and diabetes

. . . some other issues. . . some other issues

low salience in areas with small low salience in areas with small ethnic minority populationsethnic minority populations

informing patients about the reasons informing patients about the reasons for collecting these datafor collecting these data

ethnicity in the context of the wider ethnicity in the context of the wider diversity agendadiversity agenda

ConclusionsConclusions

clear policy commitmentclear policy commitment clear legal driversclear legal drivers information vacuuminformation vacuum

• (with some variations)(with some variations) ideal solution some way offideal solution some way off may be a place for interim may be a place for interim

approachesapproaches