This document discusses the need for the General Practice Data for Planning and Research (GPDPR) Programme in England. It notes that England's NHS faces challenges from an aging population with rising long-term conditions. Good primary care data on the health and healthcare use of the population is essential for NHS planning, public health surveillance, and research. However, concerns have been raised about the GPDPR regarding a lack of publicity about opting out and potential confidentiality issues if too many people opt out. Building public trust will be important for the success of the program.

1. Why we need the General
Practice Data for Planning and
Research (GPDPR) Programme
Professor Azeem Majeed
Head of Department of Primary Care & Public Health, Imperial College London
Twitter @Azeem_Majeed

2. Declarations
I have received funding for research using data from NHS medical records
from the NIHR, NHS, MRC and Wellcome Trust
I have been using NHS data for research and planning for over 25 years
I have written reports on the secondary uses of primary care data for the
Department of Health in 2002 and the Association of Public Health
Observatories in 2005
I worked as a Medical Adviser at the UK Office for National Statistics
during the period 1997-2004
I continue to work in NHS General Practice and in NHS Public Health in
addition to my academic role

3. England’s NHS faces major challenges
• Population of the UK is ageing
• Greater support is needed for frail, older patients
• Prevalence of many long term conditions – such as type 2
diabetes – is increasing
• Greater focus in prevention and healthy living needed
• Quality of care can vary between different general practices and
geographical areas
• Considerable financial pressures on government spending
• Since early 2020, we have been in the midst of the global
Covid-19 pandemic
• Good data on the health and healthcare use of the population of
England is essential for NHS planning, public health
surveillance and research

4. Expected rise in LTCs in England 2010-2040

5. Primary medical care data
Over the last 30 years, we have seen a shift away from recording medical
data on paper records in general practice
Data now recorded using electronic medical records in all NHS general
practices
Collected through day to day clinical work of family practitioners, primary
care physicians, nurses and other professionals
Additional data sent electronically to practices (e.g. lab results) or added
to medical records by primary care staff (hospital activity data)
Provides a unique resource for NHS planning, public health surveillance
and research
Value of NHS data was shown in the Covid-19 pandemic

6. Page 6
Strengths of primary care data
Population based
Most contacts with health services take place in primary care
Information on most aspects of care (morbidity, physical measurements,
investigations, treatment, prescribing, and outcomes & utilisation)

7. Page 7
Weaknesses of primary care data
Data has often come from volunteer practices & hence may not be
representative (e.g. Clinical Practice Research Datalink)
Quality & completeness of data recording varies widely
Lack of socio-economic & ethnic data
Multiple clinical systems, not currently well-linked to hospital systems
Data has been difficult & expensive to access in the past
GPDPR can help address some of these weaknesses

8. Information contained in GP medical records
Demographic data: e.g. date of birth, ethnicity
Clinical diagnoses: e.g. diabetes, pneumonia
Coded using Read codes / SNOMED in the UK
Measurement data: Blood pressure, height, weight, BMI
Preventive care: screening, smoking status, immunisations, health checks
Prescribing data: for drugs issued by GPs
Laboratory data: e.g. lipids, glucose, renal function for tests organised by
GPs
Covid-19 testing and vaccination data
Page 8

9. Page 9
Value of data can be improved through linkage
Hospital Episode Statistics
Office for National Statistics Mortality Records
Cancer Registration Data
National Audits (e.g. Diabetes)
Laboratory Data (e.g. tests organised by hospital specialists)
Imaging Data (e.g. x-rays, scans)

10. Page 10
Why is primary care data needed?
Help clinicians provide medical care
Plan health services
Measure clinical performance
Measure health service utilisation
Public health surveillance
Monitor inequalities
Health services research, clinical epidemiology, & clinical trials

11. Distribution of cardiovascular risk in England

12. Emergency hospital admissions in people with Type 2
Diabetes

13. Concerns about GPDPR
The programme was not well-publicised
Opt-out was made difficult (paper-based, not electronic)
Public concerns about how the data may be used and over confidentiality
If people opt out of the programme, that could reduce the validity of the
any analysis using the data
Many GPs are receiving opt out requests from patients
GPs have also been informed they need to perform a data protection
impact assessment (DPIA)

14. Final thoughts
GPDPR is essential for the NHS in England
Also essential for public health bodies, universities
Important to consider how the data could also support the UK life sciences
industry with suitable protections
Essential there is public trust in the programme and in data confidentiality
Needs to be overseen by an independent committee to build public
confidence and trust
Without good population-based data, the NHS “will be flying blind”