An ethical approach to using care home data

The findings from the Care Home Data Review (CHDR) include a number of recommendations around the ethical use of adult care home data, and adult social care data more generally, for uses beyond direct care. This report provides more detail than the summarised chapter in the CHDR report.


3. Social care research ethics infrastructure in other parts of the UK

Social care research in England and Wales does not require review by a REC within the UK Health Departments’ Research Ethics Service if it is reviewed by another committee operating in accordance with the Economic and Social Research Council’s Framework for Research Ethics[9], [10], (for example, a University REC) unless any of the following apply:

  • The research involves deviating from standard social care
  • The research involves NHS patients or service users as research participants
  • The research is a social care research project funded by the Department of Health and Social Care in England; involving adult social care service users as participants
  • There is a legal requirement for REC review of the research

In addition to university ethics committees and local authority ethics committees, there are several RECs that review social care research in addition to health care research across the UK. There are three RECs based in England which are flagged to review social care research. These three RECs are capable of reviewing social care research studies from England, Wales and Northern Ireland. Moreover, both Health and Social Care (HSC) RECs based in Northern Ireland can also review Northern Irish social care research studies.

As a result of the close alignment between the Mental Capacity Act 2005 and the Mental Capacity Act (Northern Ireland) 2016, a scheme of mutual recognition of NHS/HSC REC review for research involving adults lacking capacity to consent is in place between England, Wales and Northern Ireland. Therefore, the three RECs based in England serve as appropriate Bodies for the review of research involving individuals who lack capacity in England, Wales, and Northern Ireland.

Similarly, both HSC RECs based in Northern Ireland are able to review research involving individuals lacking capacity from England, Wales and Northern Ireland.

For research and innovation studies conducted in England and Wales:

applications submitted to a social care-flagged REC are expected to fit into one of six IRAS categories (basic science studies involving human participants, studies that administer questionnaires or interviews for quantitative analysis, those employing mixed quantitative/qualitative methodology, research involving qualitative methods exclusively, projects limited to working with data (for specific projects), and research databases).

As mentioned above, in England, there are 3 RECs flagged to review social care research[11]. Social Care Research which is funded by the Department of Health and Social Care or the School for Social Care Research should be reviewed by one of these Social Care RECs. There are no dedicated Social Care RECs in Scotland.[12]

Contact

Email: SWStat@gov.scot

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