Patients' attitudes towards sharing medical data for research: Desk research
Summary of findings
General public/patient opposition to the use of medical data by those other than clinicians without explicit consent.
Patients/the public are supportive of the principle of medical research in general, but this does not equate with implicit consent.
The patient’s proximity to and control over their personal data appears to drive their willingness to support its use in research. Both ‘who’ and ‘where’ are important.
Patients and the public see a number of ethical issues related to the use of their data.
Patients want permission sought at the point of treatment. It is likely to be more effective to target consent requests at treatment points as patients are more willing to give consent.
Low levels of awareness among patients/the public about confidentiality and data use.
Patients see a number of ethical concerns related to the use of their data.
Some groups of patients and the public are more likely to give consent than others when asked.
Similar issues (tension between individual rights and collective needs) and debates in many other countries, but little evidence of solutions
Rapid review of academic and market research literature on the general public’s opinions on:
- Their data being accessed by the Government for research;
- Their medical data being accessed, so that they can be invited to participate in relevant health research; and
- Their medical data being used for health research
This area of research grew in the UK with the institution of the data protection act, however, in comparison with other economically similar countries, such as Canada and the US, UK research in this area is sparse
Desk research to summarised public attitudes towards sharing medical data for research purposes
medical and social science databases:
- Global health global health archive
- NHS National Health Library for Health Specialist Libraries
- Web of Knowledge
- CAB Abstracts
- Academic Search Primer
- CINAHL Plus
- The Cochrane Library
- TRIP Database – for Evidence Based Medicine
- HMIC Health Management
This search identified 47 relevant and robust, predominantly academic, sources. The remaining approximately 20 studies mainly cover research conducted in England and Wales or other parts of the UK, but also summaries of important international evidence.
25 experts were consulted to source literature on the topics in question.