15 Dec 2021

This year the theme was: ‘Involving people from diverse communities in co-producing research – nothing about us without us’.

The aim of the event was to discuss how health and social care researchers can and do work in partnership with people from under-served groups, e.g. people with disabilities; Black, Asian and minority ethnic groups and others facing inequalities.

The event was chaired by Zoe Lelliott, ARC South London’s co-deputy director and theme lead for the Involvement and implementation theme. Hameed Khan, Chair of ARC South London’s Involvement Advisory Group and Savi Hensman, patient service user and carer and public involvement coordinator welcomed attendees and set out the structure of the event. Savi mentioned the National Institute for Health Research’s description of co-producing a research project as an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge – which can be even more challenging than other forms of involvement.

The two main speakers were:

  • Peter Beresford, a distinguished academic and activist. Peter is Co-Chair of Shaping Our Lives, a user-led organisation working for inclusive involvement of disabled people and others from marginalised communities, and a long-term user of mental health services. He is a Visiting Professor at the University of East Anglia and Emeritus Professor at Brunel University London and Essex University. He has also been involved with NIHR ARC East of England.
  • Josephine Ocloo, a senior researcher and Health Foundation Improvement Science Fellow at King’s College London, who is also a champion for harmed patients and their families. She uses participatory and action research methods and is the Equity, Diversity and Inclusion lead for ARC South London. Peter and Josephine were among the editors of an online book on co-production, published earlier in 2021.

Both speakers shared their personal experiences of what motivates them in their work, what good and bad involvement looks like and what they believe needs to change for effective co-production and inclusive involvement in health and care research (you can watch the presentations and the Q&A that follows here).

Peter Beresford

"We may all need some support and help to do co-production and involvement. It is critical to support peoples’ empowerment with IT support, to gain skills, confidence and that they learn practical ways to gain access points within organisations. There needs to be an equality between traditional understandings of knowledge and the ‘lived experience’ where both are treated as of equal importance in value."

Peter highlighted research that he has carried out at Shaping our Lives which identified five groups of people who have been left of participation in research:

  1. People who have protected characteristics
  2. People with poor housing, homeless or have issues with citizenship
  3. People who communicate differently e.g. non-verbal communication, English not being your first language etc.
  4. People who are assumed to be too disabled, too much of a survivor and it is assumed that they would not want be involved
  5. People who were seen as too well-equipped to be involved, as they may want different things to the ideas put forward and be considered too challenging by researchers.

Josephine Ocloo said: “We need to broaden out the conversation and be open to challenge. We can’t do this unless we create the structures to support, enable and empower different groups to be involved. We need to make equity, diversity and inclusion the centre-piece for involvement. Our starting point should be what does diversity look like? Then think about how we can bring those groups in to start those conversations. We need the lived experience and we need to value the people who have lived the experience and value them. Early on in our research we need to develop community engagement strategies and look at sharing power and resources.’

People taking part in the event raised issues which prevent people from becoming involved in research including: lack of computer literacy and skills; lack of funding to support involvement, delayed payment processes and funders’ structures which value the professional researcher over the service user researcher even when they are co-applicants on research.

Following a Q&A the attendees went into breakout groups. To discuss different topics:

1. Co-producing research: lessons from organisations which work with disabled people

2. Communication needs and challenges

3. Research questions and service user interests in an unequal world – how inequality might affect the focus of studies

4. Creating a positive environment for service user researchers

5. Working together from the beginning to end

6. Digital inclusion/exclusion

Feedback from the event was extremely positive. Public involvement and community engagement manager ARC (North East and North Cumbria), Dr Felicity Shenton commented: "I was at your PPI meeting last night and just wanted to say how much I enjoyed it! It was really interesting, informative and inspirational. There was a very inclusive atmosphere which generated lots of open and honest conversations. It was a great example of co-production so, thank you very much to you and your colleagues."

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