Policy

Personal data for public good: using health information in medical research

Summary| Working Group Membership| Terms of Reference| Review Group Membership| Project Downloads

Medical research using patient data has had a long and successful history of providing vital knowledge on the causes of disease and the effectiveness of treatments. The unique features of the UK National Health Service and the advent of large patient databases present unparalleled opportunities for enhancing such research.

However, it appears that advances in this field are increasingly inhibited by unnecessary constraints on the use of patient data. Constraints include confusing legislation and professional guidance, bureaucracy of process and a lack of engagement between patients, data controllers and researchers.

Medical confidentiality and appropriate consent are important entitlements that must be protected by an ethically sound regulatory framework. Technological developments in database management present ever more sophisticated research opportunities. It is crucial that measures to preserve confidentiality and ensure appropriate consent adapt rapidly and in ways that allow research to proceed effectively.

In October 2004, the Academy of Medical Sciences launched a study to examine the current and future situation regarding the use of patient data in medical research.

The report of this study 'Personal data for public good: using health information in medical research' was published on Tuesday 17 January 2006.

A symposium was held on 26 June 2006 bringing together senior members of the legal professsion to discuss the arguments presented in the Academy's report. A report of this symposium can be downloaded below.

Since the publication of our report in 2006 the Academy has been a consistent voice in debates on the use of patient records in research. In particular Professor Graham Watt FMedSci, a member of the Academy’s original working group, has participated in the development of a report to identify best practice guidance to help ensure GPs and patients have confidence in the process used to access patient information.

The report was published by the Wellcome Trust in July and has since been endorsed by the British Medical Association and the
Royal College of General Practitioners among others. Click here to download the report 

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Professor Robert Souhami CBE FMedSci (Chair) 
Professor Emeritus, University College London 

Dr Sandy Chalmers
Director, Data Privacy Policy, GlaxoSmithKline

Professor Rory Collins FMedSci
Professor of Medicine and Epidemiology, Clinical Trials Unit, University of Oxford

Professor Karen Luker FMedSci
Professor of Community Nursing, University of Manchester

Professor John Newton
Professor of Epidemiology and Public Health, University of Manchester

Professor Alan Silman FMedSci
Professor of Rheumatic Disease Epidemiology, University of Manchester

Professor Graham Watt FMedSci
Professor of General Practice and Primary Care, University of Glasgow

Professor Simon Wessley FMedSci
Professor of Epidemiological and Liaison Psychiatry, King’s College London

Dr Ron Zimmern
Director, Public Health Genetics Unit, University of Cambridge

Dr Helen Munn (Secretariat)
Senior Policy Officer, Academy of Medical Sciences

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The working group's remit was to 'examine the current and likely futrue UK position regarding the use of personal data in medical research.'

In so doing to:

• Analyse the development of the present position regarding the use of personal data and the necessity and requirements for this type of research.
• Analyse the advantages and problems of the national and international regulatory environment in this area.
• Make recommendations for dealing with key issues of consent, security of data, confidentiality and public engagement.

The remit excluded the working group from:

• Providing practical guidance for researchers on how to negotiate the current environment governing the use of patient data in research.
• Considering the use of human tissue as governed by the Human Tissue Act.
• Providing practical guidance to clinicians on obtaining patient consent.

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Professor Nick Wald FRS FMedSci (Chair) 
Professor of Environmental & Preventative Medicine, St Bartholomew's & Royal London School of Medicine and Dentistry

Ms Mary Baker CBE
President, European Parkison's Disease Society

Professor Roger Jones FMedSci  
Wolfson Professo of General Practice, King's College London

Baroness Onora O'Neill PBA FMedSci
President, The British Academy

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• Report [3.99mb]
• Press release [84.63k]
• Call for Evidence [136.21k]
• Report of legal symposium [509.1k]

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