Using routinely collected data Dr Colin Fischbacher Information Services Division NHS National Services, Scotland

Talk outline Potential role of routine data Potential role of routine data The current situation The current situation Primary carePrimary care Secondary careSecondary care Other sourcesOther sources Some conclusions Some conclusions

Why use routine data? Considerable existing investment in data collection Considerable existing investment in data collection Very large datasets with universal coverage Very large datasets with universal coverage Marginal cost of adding ethnic group is relatively small Marginal cost of adding ethnic group is relatively small May increase profile of ethnic health inequalities May increase profile of ethnic health inequalities

The vision: a routine system for collecting ethnic information Based on self-definition Based on self-definition Collected with informed consent Collected with informed consent Agreed categories, compatible with census Agreed categories, compatible with census Collected once (probably in primary care) and transferable using standard data format Collected once (probably in primary care) and transferable using standard data format Collected by fully trained staff Collected by fully trained staff Records everything needed for appropriate care (origin, religion, language, other?) Records everything needed for appropriate care (origin, religion, language, other?)

What could this provide? monitoring uptake of services monitoring uptake of services targeting services targeting services ensuring care is appropriate ensuring care is appropriate policy development policy development performance management performance management DOH. Collecting ethnic category data. Oct 2001

Drivers in Scotland supporting patient focussed care supporting patient focussed care demonstrating compliance with legal obligations demonstrating compliance with legal obligations investigating ethnic variations in health and health care provision investigating ethnic variations in health and health care provision

Recent developments in Scotland Fair for all audit Fair for all audit ISD’s Equality and Diversity Information Programme ISD’s Equality and Diversity Information Programme Diversity audit of health databases Diversity audit of health databases

The current situation: primary care information on ethnicity not collected in Scotland information on ethnicity not collected in Scotland largely incomplete in England? largely incomplete in England? some local efforts based on mailshots some local efforts based on mailshots as in Liverpool – 58% coded as in Liverpool – 58% coded but very intensive (~70p/patient)but very intensive (~70p/patient)

Issues in primary care ethnicity as a clinical condition rather than a demographic characteristic ethnicity as a clinical condition rather than a demographic characteristic ensuring both standardisation and flexibility for data collection ensuring both standardisation and flexibility for data collection availability of standard Read codes availability of standard Read codes ability to share data ability to share data

The 2006 GMS contract Includes 1 point in organisational domain for the collection of ethnic group information Includes 1 point in organisational domain for the collection of ethnic group information... but does this include electronic recording?... but does this include electronic 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: secondary care Field for ethnicity in Scottish SMR databases since 1996 Field for ethnicity in Scottish SMR databases since 1996 recorded in only 9.2% of hospital episodes (46.2% in one Ayrshire acute trust)recorded in only 9.2% of hospital episodes (46.2% in one Ayrshire acute trust) until 2004 used ethnic grouping that did not match the Census categoriesuntil 2004 used ethnic grouping that did not match the Census categories “Although not mandatory it is strongly recommended that these items be completed whenever the information is available”“Although not mandatory it is strongly recommended that these items be completed whenever the information is available”

The current situation: secondary care Ethnic monitoring in England Ethnic monitoring in England workforce (1991) patients (1995)workforce (1991) patients (1995) guidelines, training for staffguidelines, training for staff Completeness of HES variable Completeness of HES variable

High HES completeness Blackledge (BMJ 2003) reported higher incidence of heart failure among South Asians in Leicester using HES data Blackledge (BMJ 2003) reported higher incidence of heart failure among South Asians in Leicester using HES data based on “self reported coding” for ethnicity; coverage “thorough”; validated using name search methods based on “self reported coding” for ethnicity; coverage “thorough”; validated using name search methods

Lower HES completeness London Health Observatory review of data 1997/8 – 2000/01 found: London Health Observatory review of 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

Ethnicity data incompleteness in HES (%) by Government Office Regions, England, 2003/04 Source:Indications of Public Health in the English Regions – Number 4: Ethnicity and Health. Association of Public Health Observatories, Oct 2005

Issues 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 “white”? How often do systems default to “white”? How well trained are staff? How well trained are staff? Is the situation changing? Is the situation changing?

Other databases Cancer registration (ethnic group available in 18% in Scotland) Cancer registration (ethnic group available in 18% in Scotland) Child health (CHI database in Scotland) – median 22% complete Child health (CHI database in Scotland) – median 22% complete Health Visitor/District Nurse databases Health Visitor/District Nurse databases Lothian database said to be “100% complete”Lothian database said to be “100% complete” Scottish Birth Record Scottish Birth Record Diabetes registers Diabetes registers GUM clinics (94% recorded) GUM clinics (94% recorded)

Issues for other databases All incomplete All incomplete Few or none match current census categories Few or none match current census categories

Another “routine” source Two health questions in the Census Two health questions in the Census

Some other issues Data standards (NCDDP in Scotland) Data standards (NCDDP in Scotland)[ Ambivalence among clinicians Ambivalence among clinicians Persistence of race as a clinical issue, eg in relation to haemo- globinopathies and diabetes Persistence of race as a clinical issue, eg in relation to haemo- globinopathies and diabetes

... some other issues low salience in areas with small ethnic minority populations low salience in areas with small ethnic minority populations informing patients about the reasons for collecting these data informing patients about the reasons for collecting these data ethnicity in the context of the wider diversity agenda ethnicity in the context of the wider diversity agenda

Conclusions clear policy commitment clear policy commitment clear legal drivers clear legal drivers information vacuum information vacuum (with some variations)(with some variations) ideal solution some way off ideal solution some way off may be a place for interim approaches may be a place for interim approaches