Linked data research in adult social care

Why have we chosen this as one of our priority-setting exercises?

We think it’s important to make use of data that’s already collected to inform and improve social care policy and practice. This was set out in the research and development strategy for Wales 2018 to 2023 launched by Social Care Wales and Health and Care Research Wales. And it’s in our research, innovation and improvement strategy Ymlaen (2024 to 2029).

We’re running this exercise as part of our role as social care theme lead for the ADR Wales programme of work, which means we’ll be taking on an ambassador role for linked data research across the sector. 

We’re focusing on adult social care because the work carried out with children’s social care linked data is already more advanced. 

How can linking data provide research opportunities?

Linking adult social care data from across Wales with other data sources (for example in health or housing) can help us understand more about the needs and issues people have. When we link data, it gives us a more complex and comprehensive picture at a population level than a single data set can provide.

The priority-setting exercise will focus on data that’s relevant to the adult social care sector. It’s data that’s already widely and routinely collected and can be de-identified, which means there’s no way to identify individuals.

Linking this data could help us ask questions about things like:

• who is accessing social care services
• patterns of access between social care services and other services like healthcare
• identified needs that are not currently being met
• current and future demand on workforce and resources
• the role of unpaid carers and volunteers
• outcomes for people accessing care and support like their physical or mental health and well-being.

The exercise will help us identify how linked data research can help shape future policy decisions and make a positive difference to those accessing care and support as well as for the social care workforce.

How will we carry out the exercise?

We’re bringing together a range of stakeholders including organisations that routinely collect data, people with lived experience of care and support, social care practitioners, third sector partners, researchers and policy makers.

We’ll use different methods of engagement, including surveys, focus groups, workshops and interviews to identify 10 priority areas for linked data research. And we’ve set up a working group to help shape and steer the exercise.

As the exercise progresses, we’ll be presented with options for priority areas. We’ll firstly check to see where research has already been carried out. And where questions remain, we’ll identify those that can be answered through linked data research.

We’ll then go back to our stakeholders to review the questions and choose a shortlist of themes. And we’ll make this process as accessible as possible to include a wide range of views.

A final workshop will be independently led to help us develop a consensus for the top 10 research priorities.

Who is helping us carry out this work?

We’ve set up a working group to explore how we can use linked data research to answer questions about what adult social care people in Wales need. 

It’s chaired by Ellie Johnson, the Social Care Wales research manager. 

ADR Wales is part of the ADR UK investment. ADR UK brings together data and approved researchers to enable research that can inform policy decisions and more effective public services.

The group includes representatives from local authorities, third sector, Welsh Government, academia, a member of the public and a prioritisation specialist.

The working group meets regularly and reviews and shapes progress along each step of the priority-setting exercise.

Engaging with our stakeholders

We’ll be asking specific groups to share their views with us.

For example, we’ll survey data owners and experts on possible research questions generated by the data that’s already available and collected in a usable way. 

We’ll also ask them to identify barriers or challenges they’ve experienced within adult social care services in Wales that linked data could help address.

We also want to hear from people with lived experience. This means talking to people who access care and support as well as frontline staff who work in the sector. We’ll be running focus groups to learn about the issues they face and look at ways these can feed into the scope of the project as part of researchable questions that could be answered using linked data.

The outcomes: the 'top 10'

At the end of the process we arrived at a ‘top 10’ of research priorities for linked data research on adult social care. 

The final 10 themes can be found here: Top 10 research priorities: linked data research in adult social care.