Developing research resources And minimum data set for Care Homes' Adoption and use (the DACHA study)

BACKGROUND In England, long-term continuing care for older people is principally provided by care homes. Residents and staff rely on the NHS for medical care and access to specialist nursing and therapy services. The creation of Integrated Care Systems https://www.england.nhs.uk/integratedcare/integrated-care-systems/ in England and recognition of the role of social care as an essential part of care provision for this population underline the need to develop reciprocal systems of working between the NHS and care homes that optimise current provision and research on its effectiveness. Within ten years future demand for long term care will outstrip current capacity. There is currently no agreed framework for collating, sharing and interpreting data collected by the stakeholder organisations involved in supporting care homes – this is a missed opportunity for co-ordination of care, service development and commissioning, as well as the conduct of research. Other countries have highly evolved minimum datasets which have shown utility in all of these areas. AIMS To establish what data need to be in place to support research, service development and uptake of innovation in care homes To synthesise existing evidence and data sources with care home generated resident data to deliver a minimum data set (MDS) that is usable and authoritative for different user groups (residents, relatives, business, practitioners, academics, regulators and commissioners). DESIGN A mixed method study drawing on design and implementation theories. Work package (WP) 1: Evidence reviews on what improves the productivity of care homes research and key measures and outcomes that have been incorporated in UK care home research that could inform a MDS. WP 2: Creation of a care home trial repository, initially including trial data on 6000 residents, with the ability to add new trials beyond the project duration. This will allow secondary data analysis and test key resident characteristics and outcomes relevant to the development of a MDS WP 3: To establish what is known about the implementation and content of MDS relevant to UK systems of care. A realist review building on WP1 to understand how MDS work in different care home settings and the attributes and situations in which their use supports improved outcomes for residents, family, staff and organisations. A scoping review of the content of Minimum data sets relevant for English systems of care MDS and survey of existing care home generated data to inform the development of a MDS. WP 4: Mapping and characterisation of existing sources of data on care home residents to create resident datasets from routine NHS and Local Authority data in two integrated care sites (ICS) to link with data collected in study care homes. Combined with WP1-3 findings and national consultation this will enable critical appraisal of feasibility of inclusion of assessment and outcome measures in a care home generated MDS for testing WP 5: Pilot and test the MDS by collecting data at three time points on 300 residents of care homes across two integrated care systems (ICS). We will pilot an electronic prototype interface to collect the care home components of the MDS, alongside the protocol for integrating these with native data from NHS and social care databases to form the full dataset. Data from the MDS will be collected at baseline, 6 and 12 months to understand the impact of seasonality. Focus groups conducted in care homes at each time point will develop an understanding of implementation issues including the perceived utility of the MDS data to key stakeholders. Descriptive statistics will be used to understand the measurement attributes of the MDS alongside factor analysis support item reduction for the MDS. Consultation with stakeholders is embedded throughout the study. In addition to the care home based resident fora, family and public involvement in each WP, there will be 4 regional expert groups. They will convene at three points in the study and will comprise of up to 40 resident and relative representatives, care home owner and staff representatives, commissioners of health and social care to care homes, researchers and NHS providers and staff. This will inform the planning of WP 1-4, develop a consensus on proposed MDS for testing, and develop recommendations for implementation. Ensuring this element of co-production is part of the project throughout will ensure outputs are fit for use and “shovel ready”. PROPOSED OUTPUTS i) Guidance for researchers and commissioners on health care implementation in care homes, resource on assessment tools and core outcomes in care home research; ii) A repository of care home RCTs to support secondary data analysis and inform MDS development that can support more research and useful findings for priority questions, without the expense and burden of involving care homes and residents in research iii) Evidence on what needs to be in place for MDS to support staff uptake, resident assessment care and improved outcomes iv) An implementation strategy for MDS that links NHS, social care and care home generated data v) A prototype MDS to inform commissioning, needs assessment and care delivery. BENEFITS There is widespread interest in how to improve the uptake of best evidence and care for care home residents. Combining existing data with care home generated data in the development of the MDS could improve the quality of life of care home residents and their experience of care and reduce NHS and related costs. By working closely with resident representatives, the care home industry, NHS England, Local Authorities, commissioners and the regulator this study addresses policy objectives of integrated care for this group with a paradigm shift towards individual and care home level information being routinely shared and used to underpin research, innovation and intervention.