An ethical approach to using care home data

4. Conclusion

The ‘GEARED UP project^[13] discusses the ethical approval challenges with accessing (social care and) care home data for research and innovation. The report states that accessing (social care and) care home data is “viewed as more complicated and time-consuming, with no single acknowledged pathway”^[14] compared to health data.

This report has identified some gaps in social care research infrastructure in Scotland that need addressed. For example, it is unclear what social care expertise existing RECs have. In addition, some organisations in Scotland have no clear route for getting their research independently ethically reviewed due to gaps in infrastructure and support for non NHS studies.

With regards to innovation, the ‘GEARED UP project^[15] states “there are no specific or dedicated processes or routes for those wanting to repurpose data for innovation or use data on care home residents specifically.” The use of both health and social care data for innovation by commercial companies is also acknowledged as less than straightforward and in need of improvement to ensure that innovation is well supported and inclusive, with sound and secure oversight^[16]”.

The GEARED UP project^[17] report goes on to identify key questions and issues with regard to the social care data ethics infrastructure in Scotland. Some of these key questions are outlined below:

Key questions for social care data ethics infrastructure in Scotland

• Why is there no robust framework nationally to support the ethical review process for social care research and innovation?
• Do RECs have sufficient social care expertise and related knowledge of research and innovation design and methods used in social care research and can the current ethical review accommodate these different methodologies?
• How can guidance and signposting be improved to direct social care projects towards particular Ethics Reviewing bodies (RECs, ESRC, Local Authorities etc)?

Source: GEARED UP project

The report states that “there is a need for a clear pathway for accessing, and seeking ethical and governance approval, for care home – and other social care – data.”^[18] The report goes onto make the suggestion that social care is added to the name of all current processes which cover social care and that there is better signposting and advice.

Improving our care home evidence is critical to shaping policy and practice in care homes, thus ultimately leading to improvements in care. There are also economic benefits with “more money and jobs if the UK environment for research attracts international research funders to invest and carry out their research here^[19]”. It can be seen that the current ethics infrastructure to support research and innovation is complex, time consuming, and inconsistent. This is to the detriment of improving care. A number of actions (see also section 6) have been identified to address the challenges around the current ethics infrastructure. To take forward this considerable programme of work, a social care ethics working group will need to be established. This working group should comprise of representation from a range of national and local organisations (e.g. local authorities), NHS REC, academia, care homes, and residents / families to ensure any future research ethics guidance and infrastructure reflect the needs of the care home sector (and the wider adult social care and social work sector).

The programme of work should consider the recent review of Clinical Trails Regulations. Furthermore, it should also build on the work of the GEARED UP project to understand the current ethical review landscape in Scotland before ultimately producing social care research ethics guidance for Scotland which should establish a clear route for social care research and innovation projects and address current infrastructure gaps. Any new processes should, where possible, align with social care research / innovation information governance applications to ensure efficiency. The new processes should also clarify when a project will need ethical review and when Information Governance is sufficient in managing risk.

Much of the above work programme will take longer than a year to develop and put in place. However, there are some medium term solutions which can be put in place whilst the social care research ethics guidance is being developed. For example, consider social care representation on RECs and the Public Benefit and Privacy Panel (PBPP) (see Data Sharing chapter, Care Home Data Review Full Report for further information), who are reviewing social care research and innovation projects, and improving the sign posting through the current landscape.