Public Consultation on the Use of Personal Health Information in Research (Ongoing)
Research using personal health information has helped scientists to identify causes of major disease and to develop effective ways of controlling epidemics. It has also demonstrated the long-term effects of new treatments, and shown how people’s health can be improved by better provision of healthcare services. This page describes a consultation we carried out to find out what the public think about this important topic.
Background to the consultation
In their report Personal Data for Public Good (January 2006), the Academy of Medical Sciences recommended that “… research funders should encourage and fund research into public awareness and attitudes towards medical research using personal data.”
In June 2006, the MRC commissioned MORI Social Research Institute to undertake work to gain insight into public attitudes towards the use of health information in medical research. Our aim was to obtain a snapshot of public opinion to inform the governance of MRC-funded research, and also to influence our work with stakeholders to develop public engagement programmes conveying the purpose and value of personal health information in research.
Findings
A press release announcing the findings of this consultation was published in June 2007 – this contains a summary of the findings:
- Public awareness of the use of personal health information for the purposes of medical research is low. They know that medical research is undertaken, but few have a good understanding of what it entails, who does it, and for what purpose;
- The two key pillars of confidentiality and consent feature highly in the debate over what information should be available, to whom, and in what circumstances. These two themes are central to building trust;
- If the public is informed about what medical research entails, they are generally positive towards it;
- Communications are key to building public trust;
- The key to effective communication on the subject is the need to keep terminology simple and tailor communications for a lay audience;
- Views of people with long-term conditions are generally more positive. They have more experience of health services and therefore a better knowledge of medical research and personal health information than the general public;
- Attitudes to medical research are generally positive and if communications are handled well, this might increase propensity for agreement to use personal health information for medical research purposes. This includes communicating the value of such use of medical records (possibly by giving examples of research that could not have been done without such access and the adverse effect of such an eventuality on public health).
The full report can also be downloaded.
For further information on this project, please contact Simon Wilde.
Contact: Simon Wilde
Telephone: 020 7636 5190
Email:simon.wilde@headoffice.mrc.ac.uk