Public involvement to enhance care home research; collaboration on a minimum data set for care homes

Abstract Introduction Information on care home residents is captured in lots of datasets (care home records, GP records, community nursing etc) but little of this information is currently analysed in a way that is useful for care providers, current or future residents and families or that realises the potential of data to enhance care provision. The DACHA study aimed to develop and test a minimum data set (MDS) which would bring together data that is useful to support and improve care and facilitate research. It is that utility that underscores the importance of meaningful public involvement with the range of groups of people affected. This paper analyses the public involvement of family members of care home residents and care home staff through a Public Involvement (PI) Panel. Objectives The objective for the PI activities was to consistently bring the knowledge and perspectives of family members and care home staff to influence the ongoing design and conduct of the DACHA study. Methods The bespoke methods of PI included a dedicated PI team and a PI Panel of public involvement contributors. Meetings were recorded and minutes agreed, resulting actions were tracked, and reflections on the PI recorded. A democratic, social relations approach was used to frame the analysis. Results A PI panel met 17 times. All meetings included both family members and care home staff. The public involvement deepened the research team’s understanding of the data environment in care homes, influenced the inclusion of quality of life and community health data in the pilot MDS and shaped research practices with care homes. Some panel members expressed personal and professional development from their involvement. Expectations of what the project could achieve had to be negotiated. Conclusions PI shaped the design and conduct of the DACHA study, grounding it in the needs and perspectives of people using and providing social care. Data research has a huge responsibility to accurately incorporate relevant public perspectives. There is an implicit assumption that records and data are objective and “speak for themselves” however there can be unintended consequences from introduction of new data requirements in practice. Patient or Public Contribution Public contributors to this manuscript include family members of older people living in care homes and staff of care homes. The wider study also involved as the public, older people living in care homes. Public contributors helped develop the project, contributed throughout the conduct of the study and some chose to be involved in preparing this manuscript.