Creating a shared data system to improve the quality of life for care home residents

It is estimated that there are around 410,000 residents across 11,300 care homes in the UK. All care homes collect, store and use data to inform their residents’ care. This includes their daily activities, types of medication, mobility and key events like falls or infections.  This data is gathered and used to inform resident care plans and respond to information requests from key stakeholders such as local commissioners and primary care. However, the same information is often re-recorded in different ways by various organisations and there is limited sharing between them. Information of importance to residents and their families such as their experience of the quality of their day to day life is typically absent from data used beyond the care home. The COVID-19 pandemic exacerbated the need for a standardised approach to data sharing in efforts to support the public health response and improve outcomes for care home residents. Without being able to share data, care homes are not able to compare and contrast their own performance with that of other care homes for the purpose of quality improvement.

In 2019, NIHR, through the East of England Applied Research Collaboration (ARC), supported the £2.4 million ‘Developing research resources and minimum data set for Care Homes’ Adoption’ (DACHA) study, led by Professor Claire Goodman, University of Hertfordshire. The study recruited 46 care homes across the three sites and 975 residents. It established a Minimum Data Set (MDS), which includes quality of life measures, to inform the care received in the care home and from health and social care organisations. One of the recruited residents hadn’t been well after falling in November and breaking her hip. She spent a long time in hospital due to a hospital-acquired infection. Of the study she said, “The DACHA assessments have shown me that I am feeling better and that my care can be measured by how I am involved in it and how valued I feel.  I feel much better in myself, and I can measure this by the assessments that I am asked to participate in every 4 weeks and my own self esteem”.

The availability of shared data is critical to planning and commissioning appropriate services that meet the needs of this population. To reduce asking care home staff to record extra information for the MDS, the study worked with software providers to upload the residents' information from the care homes' records. Care home staff found using new measures challenging but described how using the findings have changed their care and how they talk with residents about what matters to them. For example, following a discussion of hospital/care home information sharing one care home changed the process by which residents were made aware of upcoming healthcare appointments. A member of staff said, “The introduction of quality of life measures by the DACHA study helped us to move conversation about the future away from preferences for end of life care. When we asked residents about the future, we realised many wanted to do many activities that were achievable, such as go shopping, but they also shared lifelong dreams. Since these conversations started, we have been able to support a resident to go to a music concert to see her pop idol. Front row tickets and a visit to the stage door has provided a whole new level of looking to the future and enhancing quality of life for her.”

NIHR Applied Research Collaborations

NIHR Applied Research Collaborations support applied health and care research that responds to, and meets, the needs of local populations and local health and care systems.