‘Lots of people who draw on care and support get asked to be ‘involved’ in social care research but want to know that their contribution will be meaningful and valued. What value does involving people with lived experience make to the research and to the individuals involved?’ 

Social care has long believed that people who draw on care support and carers have the right to be involved in research about the support they receive – based on the principle of ‘nothing about us without us’.  

This can also improve the quality of the research – for example, in situations where co-researchers can build a better relationships with someone taking part, and where people who really understand the issue being researched are involved in analysis. 

However, there is a risk that people get asked to ‘be involved’ with research without agreement about what this means, or in tokenistic ways.  

Key terms Benefits Resources

The guide:

  • Sets out some initial key terms
  • Summarises the evidence around potential benefits of working together, to both people and the research

Key Terms

This guide focus on research ‘with’ people rather than ‘on’ them – using Peter Beresford’s definition of ‘collaborative or partnership research’ as situations where “service users and/or their organisations and researchers and/or their organisations jointly develop and undertake projects.” 

This is different to ‘user involvement research’ (where input from people using services is added to existing approaches) and to ‘user-controlled research’ (where people using services and their organisations initiative and control the research). 

The term ‘co-researchers’ is often used to mean people who have lived experience of the topic that is being researched, who bring this with them as part of the research team. They often work alongside researchers from other backgrounds (some of whom might be researchers at a University who work on a range of social care topics, without necessarily having lived experience of the specific topic or situation being researched). 

We also build on SCIE’s definition of co-production as “working in partnership by sharing power between people who draw on care and support, carers, families and citizens.” 

The National Institute for Health and Care Research is clear that co-producing research should be based on a series of key principles: 

  • Sharing of power – the research is jointly owned and people work together to achieve a joint understanding 
  • Including all perspectives and skills – make sure the research team includes all those who can make a contribution 
  • Respecting and valuing the knowledge of all those working together on the research – everyone is of equal importance 
  • Reciprocity – everybody benefits from working together 
  • Building and maintaining relationships – an emphasis on relationships is key to sharing power 

Benefits

For people involved in research

Below are the potential benefits that can be experienced by those individuals who draw on care and support or are carers, when they get involved in research.

The literature is clear that people who draw on care and support and carers want their experiences to be able to make a difference to others. This isn’t just about our own experience, but about working with others to have a collective voice. It can be about making a difference now – but also (perhaps for people nearer the end of their lives in particular) about leaving a positive legacy for others in the future. 

“It is exciting to be part of the team that helps to set the research agenda and to have a real influence over the research done at the University. We certainly feel a great sense of ownership over what is being done at the University and that is very powerful.” (Bowker et al., 2019, p.22) 

“For researchers to ask us what we want researched and not decide for us what they are going to research for us. There’s this perception that we can’t choose the research, when we’re the best people to ask in the first place.” (Davies et al., 2021, p.144) 

Control and ownership over both the research agenda and its outcomes were highly valued by co-researchers. In bringing their life experiences to the table, co-researchers were able to help focus the research on issues that really matter to themselves and other people who draw on care and support. They particularly valued helping to create practical resources that would be useful to others in improving care and support. 

“We just want to say that people with learning disabilities CAN do research. Because we can! We broke through the barriers! We’ve gone out there and we’ve achieved something special. It is right for people with a learning disability to be heard and to be seen, and not just to be walked over. To be able to take part in doing things. It’s like a book, don’t always judge a book by the cover. Always look inside to see what a person can do. It is good for people to get the opportunity to go out in the world and to do normal things that other people do.” (Tuffrey-Wijne et al., 2020, p.313) 

“It’s so hard to measure value, but I’ve seen it for myself in my own group of ‘Minds and Voices’ of how peoples’ confidence has improved, how their opinion of themselves at the beginning of the project might have been zero if they were asked if they felt like a researcher, but how now, they can see the valuable contributions they make are real.” (Davies et al., 2021, p.145) 

Being part of research – and seeing what could be achieved – gave people a sense of pride, confidence and self-worth. Knowing they could contribute to something like a research study – and that their contribution makes a difference – was important to people. As one co-researcher put it, carrying out my first interview had been “the best day of my life.” (Hollinrake et al., 2019, p.757) 

Part of feeling like this was the attitudes of other research team members, who had a key role to play in making everyone feel equally important and part of the team. 

  • Personal growth and a boost to their confidence – including to be involved in future research
  • Training to enhance existing skills and develop new ones.  
  • Develop research skills and being exposed to insights from the latest research
  • Opportunity to use skills and experiences developed during their working lives and in future employment
  • Challenging negative stereotypes and prejudices about people with lived experience
  • The skills they gained could also benefit others who draw on care and support in the longer-term

Several studies talk about opportunities to get to know different people and building trust with each other, often facilitated by the creation of inclusive, safe environments.  

As with all workplaces and teams, people valued the social side of working together – having fun, chatting, getting to know new people. For some people who might be isolated or feel cut off from relationships, this could be a positive experience in its own right. 

For the research

Below are the potential benefits to the research.

Collaborative research helps to focus on things that matter to people who draw on care and support and carers – and to make the research more relevant. This guards against the danger that research only gets shaped by what is of interest to academics, or by their assumptions around what’s important. 

‘Relevance’ is also one of three key ways that the quality of UK research is judged. 

“It’s something about trying to recognise that we’ve all got something to offer.” (Ward et al., 2020, p.4) 

Genuine collaboration and a commitment to working together as equal partners helps to create deeper, more complete insights into the topic being researched. The literature talks about “new, shared knowledge” (Sarre et al., 2023) and a “collective story” (Hollinrake et al., 2019). As a researcher in the briefing produced by Ward et al (2020, p.5) said: 

“It’s about recognising the expertise of people. It’s about recognising that research is comprised in many different knowledges and that those different types of knowledge contribute to the value and the depth and the roundedness of the research.” 

This is an important part of validating research findings, especially when it comes to understanding the experiences of seldom heard groups.  

For academic researchers, this has meant that they have gained valuable insights and enhanced their own knowledge in a way that might not otherwise have been possible.

For some topics, the sharing of life experiences between co-researchers and people taking part in the research can help to generate a stronger relationship, greater openness and better data. 

This might be where there is scope for trust, empathy and mutual understanding based on similar experiences, or through the sharing of certain characteristics, such as age, ethnicity or local knowledge. 

This isn’t automatic – and some people can feel reluctant to talk to someone who they see as being from their own community (for example, through concerns about confidentiality). However, collaborative research – when thoughtfully conducted – can generate better understandings. 

This doesn’t just improve individual studies, but has the potential to ‘democratise research’ more generally. (This is an unusual phrase – but it can mean making the research more inclusive and accessible, so that a wider range of people can engage with it and are involved in shaping it). 

As Mikulak et al (2021, p.59) argue: 

“[Collaborative research has the] potential to open academic practice up for questioning and probing from non-academic collaborators, which in turn might expose its dead angles and limitations. It can also challenge and motivate academic researchers to make research processes more transparent and accessible, in effect demystifying research, making room for more democratic practices of knowledge production and sharing.” 

Resources

Full Report (Word)
Ask IMPACT Search Strategy