Public confidence in the use of patient data
The Wellcome Monitor (Wave 3) found that almost four in five of the public (77 per cent) say they would be willing to allow their medical records to be used in a research study if they were anonymised.
However, there is little understanding of what this actually means in practice.
The public need to have confidence in how their medical records are used. This will require both openness and transparency.
What we're doing
Independent patient data taskforce
Following the launch of the Caldicott review, we're supporting and hosting an independent taskforce on the use of patient data. It will develop innovative approaches and tools to encourage more effective communication about how patient data is used.
Access to patient data by commercial organisations
We know from previous research that, while most people are happy for their medical records to be used for research, many are uncomfortable with the idea of companies accessing their medical records.
In March 2016 we published a report on public attitudes towards commercial organisations accessing health, medical and genetic data. We commissioned Ipsos MORI to undertake in-depth research that included exploring where there may be ‘red lines’ for purposes or data users that people find unacceptable.
- final report [PDF 2.8MB]
- executive summary [PDF 367KB]
- presentation on the key findings [PDF 658KB].
The research benefits of using patient data
To demonstrate the enormous value of using data from patient records to improve health, we’re working to develop a range of case studies from the research that we and other funders support.
Steps to increase public confidence
We're recommending that six key actions are necessary to avoid repeating the mistakes of care.data. This NHS England initiative to extract patient information from GP databases across the country attracted widespread criticism in 2014.
- Create clear governance with a single framework for accessing patient data.
- Develop requirements for securing data facilities and accredited safe havens.
- Define how researchers can and cannot access and use data.
- Develop a single communication strategy with clear information to reach the widest audience.
- Be clear about the patient opt-out process.
- Develop methods to safeguard patient identification.
The background to these recommendations is outlined in our briefing: Ensuring the effective use of patient data [PDF 314KB]
- The Wellcome Monitor is a UK survey conducted every three years to look at the public’s attitudes towards medical research, science and health.
- In July 2013, we commissioned CM Insight to conduct qualitative research on public attitudes to personal data and linking personal data [PDF 404KB].
- Public support for research in the NHS, June 2011. Ipsos MORI research for the Association of Medical Research Charities found that 80 per cent of the public were definitely or probably happy to be approached about health research that would involve allowing a researcher confidential access to their medical records.
- Who sees what?, October 2010. The New Economics Foundation carried out a two-year public engagement exercise on the use of electronic patient records in the NHS.
- Privacy and prejudice, October 2010. The Royal Academy of Engineering’s report explores young people’s attitudes to privacy, security and possible abuses of electronic patient records.
- The use of personal health information in medical research, June 2007. Ipsos MORI research for the Medical Research Council found that public awareness of the use of personal health information for the purposes of medical research is low.
If you have any questions, contact Natalie Banner:
Sharing data helps researchers to access and build on new information and knowledge.
Science policy affects a broad range of issues, ranging from data sharing and gene editing, to intellectual property and regulation.