The Lambeth DataNet - how UK primary care data can inform service development and research Peter SchofieldMRC Population Health ScientistDepartment of Primary Care and Public Health SciencesDivision of Health and Social Care ResearchKings College London

peter.1.schofield@kcl.ac.uk

The unique benefits of UK primary care data

• Universal health care -> free at the point of use

• National Institute for Health & Care Excellence (NICE) guidelines -> ensure standardised

treatment

• Quality and Outcomes Framework (QOF) - national incentive scheme -> standardised

data collected

• Primary care –> first point of access

• -> GP holds central care record for each patient

• National data

– QOF register -> national data at practice level

– CPRD, THIN, QRESEARCH -> national data at patient (sample) level

• Local data

– Small number of schemes -> comprehensive local data at patient level

Brixton Market

Clapham Common

Deprivation scale

Most deprived

Least deprived

Socio-economic diversity in Lambeth

Lambeth is the 19th most deprived (of 354 local authorities in England)

Proportion non-white British

Ethnic diversity in Lambeth

Lambeth has the 2nd highest proportion of Blackresidents in the UK (25.8%)

What socio-demographic information do we have?• Residential area (detailed): 99.9% of patients• Ethnicity (census - 16 categories): 81%• Main language spoken: 73% • Country of birth: 56%• Religion: 47%

What clinical information do we have?• Potentially anything coded by the GP: i.e. diagnoses, test results, prescribing ..• QOF indicators are particularly reliable• Can be linked with secondary care (hospital records, psychiatric records)• Also linked to area level data (e.g. census, area deprivation etc.. )

The Lambeth DataNetGP records and patient profile data covering Lambeth GP practices

When is this data collected?• Typically we have obtained a new extraction annually • Can now analyse longitudinally patient records going back to 2008

How much data do we have?• Currently all patient records for 51/52 GP practices in Lambeth• Approximately 350,000 patients in total

Who owns the data?• Ultimately the data is owned by Lambeth GPs • Responsibility for approving research and organising the extractions is

delegated to the DataNet steering group

How is the data collected?• Previously extracted from practice computer systems using MIQUEST software

– required specialist expertise to run queries• Currently extracted centrally using EMIS Web

– easier to run queries on the data– potential to update and interrogate dataset in real time

Encrypted ID“Read” codes

Socio-demographic profile*

*data here is fictitious but in the same format as original records

Clinical record*

*data here is fictitious but in the same format as original records

Why is this useful for research?

- Lambeth is well placed for research into ethnic and socio-economic inequalities

- Typically better socio-demographic information compared to national data

- Larger sample of non-white ethnic groups than other national datasets

- i.e. national survey data / national health records datasets

- Local data -> allows analysis in context

- Whole population data => Includes information about healthy controls

-

Studies so farEthnic inequalities in blood pressure controlMarked ethnic inequalities were found, with black patients significantly less likely to achieve BP targets than white (OR 0.73). Once ethnicity was accounted for social deprivation made little or no difference.

Ethnic inequalities in the treatment of hypertensionNational guidelines recommending specific therapy for hypertension management often ignored. Applies to both black and white patients equally.

Cardiovascular Risk ScoresWe compared the results of four different CVD prediction scores: FRAMINGHAM, Q-RISK2, ASSIGN and ETHRISK. We found all except Q-RISK2 over-predicted risk for the black population.

Ethnicity and stroke risk in patients with atrial fibrillationStroke risk is higher among South Asians with AF. Under-prescription of anticoagulants persists in all ethnic groups.

Ethnic differences in the management of patients with psychosisNo ethnic differences in physical health care BUT Black patients > 2 x likely to be on depot anti-psychotics.

Ethnic isolation and ethnic inequality in risk of psychosis

Controlling for deprivation, Black people in high own ethnic density areas showed no difference in psychosis rates but in low ethnic density areas were at significantly greater risk.

Analysis at lower super output area (LSOA) level –approx. 1,500 people Much smaller effect size shown at (typically used) middle SOA level – approx. 7,500 people

Ethnic Density IRR 95% CI

1st quintile1(most dense) 1.00 -2nd quintile 2.50** (1.37-4.58)3rd quintile 3.59*** (1.87-7.00)4th quintile 5.39*** (2.48-11.69)5th quintile (least dense) 5.24** (1.95-14.07)

Predictors of first episode psychosis for black population in Lambeth

Ethnic density and rates of first episode psychosis for black population in Lambeth

1st quintile - m

ost dense

2nd quintile

3rd quintile

4th quintile

5th quintile - l

east dense

0246

Current follow up studyRevisit ethnic density analysis using:

1) Lambeth DataNet linked with psychiatric data – to validate and enhance primary care mental health data

2) Data pooled with similar primary care data collected for East London practices

Other current projects using similar linked data

• Location of care for people with severe mental illness: implications for service use and costs– Investigating the shift from secondary to primary care for severe

mental illness using Lambeth DataNet linked to psychiatric records

• Mental & physical health in Lambeth– Investigating physical health care of people with severe mental illness

using linked data

Other projects

• Effect of multi-morbidity on blood pressure control – also using data pooled with health records from East London

• Ethnic inequalities in smoking and COPD rates

`

Data Governance

• Ethical approvalNHS ethics committees now treat secondary data analysis as audit => ethical approval usually not required

• Local governance approval

BUT obtaining local approval for data sharing can be a challenge:

• Care.dataRecent attempt to introduce a comprehensive national patient records research dataset

-> public outcry over potential for data sharing abuses

now much more difficult to obtain local data sharing approval

• NHS re-organisationLocal Primary Care Trusts (PCTs) recently disbanded

-> approval process now being re-organised

• Data Linkage approval Currently difficult to obtain for sensitive data

Relies on “accredited safe haven”

Lambeth DataNet and Audit Identify inequalities

• e.g. under-diagnosed diabetes in black community Identify unmet needs

• e.g. under-use of anti-coagulants in AF Apply targeted interventions Inform re-design of services

Public health reports feeding back individual practice performance in key clinical areas:

• Hypertension• Atrial fibrillation• Diabetes• Dementia• Severe mental illness• Depression• Use of Psychological Therapies

Summary• The UK is uniquely well placed to provide electronic health records

for audit & research

• Local data enables whole population studies in context

• Lambeth DataNet is a particularly valuable resource for research

into ethnic inequalities

• Data linkage has enabled a range of studies examining the interface

between primary and secondary care

• Obtaining local governance approval can be a challenge

• Local data facilitates local audit

Lambeth DataNet PublicationsMathur, R., E. Pollara, S. Hull, P. Schofield, M. Ashworth and J. Robson (2013). Ethnicity and stroke risk in patients with atrial fibrillation. Heart.Schofield P, Crichton N, Chen R (2012) Methods for assessing cardiovascular disease risk in a UK black population. Heart.Schofield P, Baawuah F, Seed P, Ashworth M. (2012) Managing hypertension in general practice: a cross sectional study of treatment and ethnicity. British Journal of General Practice Schofield P, Ashworth M, Jones R (2011) Ethnic isolation and psychosis: re-examining the ethnic density effect. Psychological MedicineSchofield P, Saka O, Ashworth M., (2011) Ethnic differences in blood pressure monitoring and control in Lambeth British Journal of General Practice.Pinto, R., M. Ashworth, P. Seed, G. Rowlands, P. Schofield, R. Jones (2010) Differences in the primary care management of patients with psychosis from two ethnic groups: a population based cross-sectional study. Family Practice.Kumarapeli, P., R. Stepaniuk, S. de Lusignan, R. Williams and G. Rowlands (2006). Ethnicity recording in general practice computer systems. Journal of Public Health