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

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.

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. It was prompted by concerns aboutunnecessary constraints on the use of patient data that included confusing legislation and professional guidance, bureaucracy of process and a lack of engagement between patients, data controllers and researchers.

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 in June 2006 bringing together senior members of the legal professsion to discuss the arguments presented in the Academy's report. Click here to download a report of this symposium.

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 through our work on the regulation and governance of health research.

Following the 2006 report 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 June 2009 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.

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 

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.
   

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