What specific public concerns have been identified about the use of health data? What lessons can be learned from trusted data initiatives? And how should proposals to share health data be communicated with the public?
Today (Friday 19 June), the Council is hosting a meeting with a wide range of stakeholders, including representatives from the Government’s National Information Board to explore ways of building sustainable public trust in the responsible use of health data.
The Council’s report The collection, linking and use data in biomedical research and health care: ethical issues (published February 2015), warned that moving ahead with initiatives to use health and care data that are not trusted by the public may compromise their ability to deliver public benefits.
The report concludes that good governance that involves public participation and accountability is needed to ensure the ethical use of data, and made a number of recommendations to the UK Government, Department of Health and the Health and Social Care Information Centre (HSCIC).
Attendees at the meeting include Dame Fiona Caldicott, National Data Guardian and Chair of the Independent Information Governance Oversight Panel and senior representatives from the Department of Health, HSCIC, Involve, Monitor, MedConfidential, Expert Advisory Group on Data Access, the Academy of Medical Research Charities, and British Medical Association.
The meeting is being chaired by Professor Jonathan Montgomery, Chair of the Nuffield Council on Bioethics, and of the Health Research Authority.
The National Information Board is responsible for the Department of Health’s strategy for the health and care system on information technology and information. The meeting hosted by the Council is feeding into work on building sustainable public trust in the responsible use of health data, which the National Information Board is taking forward over coming months.
A detailed note of the meeting has been published and is available online.