e-Health Research in Context

The UKCRC has played a part in a larger body of work by several groups and organisations which are working to realise the benefits of electronic patient records and explore the issues surrounding the use of personal data. You can read about what they do below and follow the links to their websites to find out more.

• NHS Connecting for Health Research Capability Programme – this formal programme of work within NHS Connecting for health is to take forward the recommendations of the UKCRC Advisory Group’s report.
• NHS Connecting for Health (NHS CfH) – an agency of the Department of Health which supports the NHS in delivering better and safer care to patients by bringing in new computer systems and services. NHS CfH is delivering the developing NHS IT Programme in England.
• Informing Healthcare – The Welsh Assembly Government programme set up to improve health services in Wales by introducing new ways of accessing, using and storing information.
• Information Centre for Health and Social Care – a special health authority that collects and analyses data from across the sector, and converts it into useful information to help the NHS and social services run effectively.
• National Information Governance Board for Health and Social Care – This is a new body which has taken over the function of the Care Record Development Board (CRDB). A Secondary Uses Working Group of the CRDB had cross membership with the UKCRC R&D Advisory Group to Connecting for Health, ensuring that they were aware of each others’ activities. The working group’s report was published in August 2007. The CRDB closed in September 2007.
• Medical Research Council Data Sharing Policy – This policy builds on the central principles of the Organisation for Economic Co-operation and Development (OECD) in its report “Promoting Access to Public Research Data for Scientific, Economic and Social Development”. These are that publicly-funded research data are a public good, produced in the public interest, and that they should be openly available to the maximum extent possible.
• EU Article 29 Data Protection Working Group The Working Party’s tasks include providing expert opinion from member state level to the Commission on questions of data protection; and making recommendations to the public, in particular to Community institutions, on matters relating to protection of people with regard to processing of personal data and privacy in the European Community.
• Ministry of Justice Data Sharing Review This review is examining the issues around use of personal data, consulting experts in the field of information sharing and privacy and reviewing evidence already in the public domain. It will then make recommendations on how to ensure personal information can be shared in an effective and pragmatic way, with appropriate safeguards for individuals and society.
• Medical Research Council Data and Tissue Toolkit – this website offers practical help with the legislative and good practice requirements relating to the use of personal information and human tissue samples in healthcare research in the UK