Collecting and Developing Adult Social Care Data for Research (COAST)

Background

The use of records and data for research is not new.  Healthcare research has used patient health records as “data” for many years to inform on better clinical practice and improve health outcomes for patients. Whilst this approach has proved very useful and beneficial for healthcare, currently there is little understanding on whether other sources of data can be used in this way. In a previous project called “CELESTIAL” which was carried out at Midlands Partnership University NHS Foundation Trust (MPFT), we explored ways in which routinely collected health and social care data could be used for research. This was important because we know that people often engage with many services when they are ill or need help, and each of those services will have an effect on the other (e.g. a person may be delayed from release from hospital because they need home support). Combining data across different services enables researchers to have a “wider” view beyond health care, and enables researchers to build a better picture of patients and service users’ experiences.

Our previous work in CELESTIAL looked at how data from two different sectors (health and social care) could be combined and linked together. We considered the procedures that were required by information technology (IT) and information governance (IG) in terms of data storage, data access, anonymisation of the data, and combining data. The project also engaged with patients and service users (PPIE) to discuss potential issues and concerns of using records as data for research. CELESTIAL outlined the procedures for combining health and social care data and demonstrated that this was feasible and acceptable. The next step now in COAST is to understand more about routinely collected social care records, and specifically how these can be transformed into data that can be used in research. COAST, which is due to begin in April 2025 at MPFT, has set out the following aims:

COAST project aims

1. Understand the circumstances and decisions that lead practitioners to enter information (data) on their electronic social care record system (the why and the how)
2. Transform this information into the type of data that researchers use in their analysis (creating variables)
3. Create a usable interactive data dictionary and “toolkit” that outlined the steps needed to create usable research data and describes the type of data that can be used for research
4. Understand the lived experience of those who receive (or have received) social care and social work services on their thoughts and perspectives of using social care records for research
5. Develop ways in which this interactive data dictionary and toolkit can best be used by organisations and researchers who wish to undertake social care record research

COAST project team

COAST will have a team of researchers, clinicians, practitioners, service users, and database specialists. We would like to invite at least 2 service users, or relatives of service users, to join our Project Advisory Group for COAST.  The group will meet four times over the 12 months of the project to advise/guide/steer our project.  We will also hold two PPIE events (at project start and project end) where we will invite patients and service users to provide a platform to discuss issues in the use of patient and service user data (e.g. consent, ethics, confidentiality, anonymisation). Patients and service users will also be invited at these events (and additional workshops) to help plan how we might best design our messaging and learning from COAST to ensure our work is meaningful and relevant to the public, patients, and service users as well as other organisations who may wish to use social care data for research (e.g. local councils, NHS, universities).