Developing research resources And minimum data set for Care Homes' Adoption and use

Approximately 420,000 people in England and Wales live in a care home, many with multiple health problems and other life-limiting conditions, including 70% with dementia.
Care homes, commissioners and regulators collect and hold a lot of information about residents’ medical history, needs, preferences and care. At present there is no consistent approach to how this is done with consent (including those with dementia) nor how it is used securely. Different people collect
different information in different ways, making it difficult to understand the care needs of residents and how these are met as they move between organisations. Consequences include duplication of effort, some needs not being identified or reviewed, feelings of frustration and failures in communication. At a
national level it is difficult to plan for future needs of residents, required treatments and services, and to research their effectiveness. A more consistent approach to how information about care home residents is recorded and handled is needed. An agreed data set would help researchers and practitioners enhance the care and quality of life for residents, families and staff. This study asks:
What is already known about how systems of information (data) sharing between the multiple health and social care organisations working with and for care home residents? How to optimise existing and future collection and use of residents’ data for planning and delivering care and research?
What is the minimum amount of information that it is feasible and appropriate to collect routinely and how that can be linked to routinely held information by GPs and hospitals? To address what is already known, a series of reviews of the evidence will identify what information is important when measuring residents’ health and wellbeing and how that information can be shared and
used by different practitioners and organisations. This will include a review of existing research databases and completed care homes research to learn what works and the evidence about resident groups available from these studies. These findings will be compared with what care home residents,
family members and care home staff involved in providing day-to-day care identify as information that is important.
Next, we will test how to combine information which is already routinely collected for health and social care with new information to achieve consistent ways of organising data for the benefit of residents and
also researchers. We will consult with stakeholders to develop a schedule of questions and linked outcome measures that could be the basis of a national database. Working with IT specialists we will test these questions and the feasibility of asking them in practice.
Finally, we will work with all interested parties (commissioners, care home owners, residents and their representatives, NHS staff and the regulator, researchers and data management and privacy experts) to develop a consensus on the minimum content of shared records, guidance on how to standardise
the way it is recorded and outcomes measured and linked to existing routinely collected data. We will test the feasibility of using the shared care record in geographically dissimilar areas that are already working to integrate health and social care data.
Throughout the study, we aim to create new ways of working and doing research in and with care homes, so that the outputs benefit not only researchers, but also residents.