Public Involvement to Enhance Care Home Research; Collaboration on a Minimum Data Set for Care Homes

Area of Science:

• Gerontology and Health Services Research
• Data Science in Social Care
• Patient and Public Involvement (PPI) Methodologies

Background:

• Existing data sets for care home residents in England are fragmented and underutilized for improving care provision.
• The DACHA study aimed to develop a minimum data set (MDS) to consolidate useful information for care providers, residents, and families.
• Meaningful public involvement (PI) is crucial for ensuring data utility and enhancing care.

Purpose of the Study:

• To integrate the perspectives of family members and care home staff into the DACHA study's design and execution.
• To ensure the developed minimum data set (MDS) is relevant and useful for end-users.
• To facilitate research that genuinely enhances care provision in English care homes.

Main Methods:

• Establishment of a dedicated Public Involvement (PI) team and a PI Panel comprising public contributors.
• Regular meetings (17 total) involving both family members and care home staff.
• Analysis of meeting records and reflections using a democratic, social relations approach.

Main Results:

• The PI Panel deepened understanding of the care home data environment.
• Public involvement significantly influenced the pilot minimum data set (MDS) design.
• Key themes emerged regarding research best practices, PI member development, and project expectations.

Conclusions:

• Public involvement was instrumental in shaping the DACHA study, aligning it with the needs of social care users and providers.
• Data research must actively incorporate public perspectives to avoid unintended consequences.
• The study highlights the importance of grounding data initiatives in the realities of care provision.