An ethical approach to using care home data

6. Social Care and Care Home Data Ethics: Aims and Recommended Actions

Aim: To embed an ethical based approach to the use of care home data (& adult social care data) in Scotland which maintains public trust and confidence.

Actions:

1. SG (Scottish Government) to establish a social care research ethics working group comprising representation from a range of national and local organisations, existing RECs, UK Social Care Research Governance Group, care homes, residents, social care service users to take forward the following:

1.1 Building on the GEARED UP project, map the current ethical review routes for using social care data / undertaking social care research to identify gaps and inconsistencies.

1.2 Produce recommendations for addressing gaps in the social care research ethics infrastructure in Scotland.

1.3 Consider how social care can be represented on RECs / PBPP who are reviewing social care research and innovation projects.

1.4 Create and publish guidance on applying social care research ethics in Scotland to support the review process for social care research and innovation by establishing a clear pathway for accessing, and seeking ethical and governance approval for using care home and other social care data.

1.5 Align (where possible) with social care research / innovation information governance applications with the aim of achieving an efficient approvals process.

2. CSO (Chief Scientist Office) and Digital Health & Care Division (SG) to ensure the social care research ethics programme of work is aligned to any planned SG Health & Social Care wide ethics work and SG wide ethics work.