Title: Developing research resources And minimum data set for Care Homes' Adoption and use (the DACHA study)
Funder: Department of Health and Social Care

Abstract: BACKGROUND_x000D_ 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, 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._x000D_ 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. _x000D_ RESEARCH QUESTIONS_x000D_ • What is already known about how multiple health and social care organisations are working with and for care home residents by sharing systems of information (data)?_x000D_ • How can existing and future collection and use of residents’ data be optimised for planning and delivering care and research?_x000D_ • What is the minimum amount of information that it is feasible and appropriate for care homes to collect routinely and how that can be linked to routinely held information by GPs and hospitals?_x000D_ STUDY_x000D_ First, the study will include a review of what outcomes are commonly measured in care home research, to help to identify potential items to include in an agreed data set, and help researchers planning future research. A second review of evaluations of intervention research studies in care homes will give information about what happens when undertaking research and using different outcome measures in the day to day setting of a care home. 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 to them._x000D_ We will bring together existing data, collected by various research teams throughout the UK. Often, teams have collected similar data about different care home residents, for example, medication records, or studies may use the same questionnaires to measure outcomes. By bringing these existing data together and asking new questions that had not been researched in the original studies, we can understand the care home population better. We already have agreement from five research teams that we can pool their data, and plan to ask more as new studies are published._x000D_ _x000D_ To address what is already known and what works when using residents’ data to inform care, we will review the kind of resident data that are currently collected and what needs to be in place for them to be useful. We will also survey English care homes to discover what information they are already collecting about their residents. 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 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._x000D_ _x000D_ Throughout the study 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

Lay abstract: BACKGROUND _x000D_ 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._x000D_ AIMS _x000D_ To establish what data need to be in place to support research, service development and uptake of innovation in care homes _x000D_ 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). _x000D_ DESIGN A mixed method study drawing on design and implementation theories._x000D_ 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._x000D_ 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_x000D_ 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._x000D_ 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_x000D_ 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. _x000D_ 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”._x000D_ PROPOSED OUTPUTS_x000D_ i) Guidance for researchers and commissioners on health care implementation in care homes, resource on assessment tools and core outcomes in care home research; _x000D_ 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_x000D_ iii) Evidence on what needs to be in place for MDS to support staff uptake, resident assessment care and improved outcomes_x000D_ iv) An implementation strategy for MDS that links NHS, social care and care home generated data _x000D_ v) A prototype MDS to inform commissioning, needs assessment and care delivery._x000D_ 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.

Research activity codes: 8.4 RESEARCH DESIGN AND METHODOLOGIES (HEALTH SERVICES)
Health categories: GENERIC HEALTH RELEVANCE