If research is to be relevant and influential, it needs to be shaped around people’s experiences. Community Living talks to Dr Joanna Griffin, research fellow at the Intellectual Disabilities Research Institute (IDRIS) at the University of Birmingham, about co-production.
Saba Salman: What does co-production mean to you?
Dr Joanna Griffin: The term’s bandied around a lot and not always in ways that reflect its true meaning. For me, it’s common sense that you would include people who have lived experience in research and in the development of services from the very beginning of the work. Otherwise, how do you know you’re meeting their needs and not missing out on vital aspects from real-world knowledge?
SS: What co-production are you doing?
JG: IDRIS, established in October 2024, focuses on supporting people with learning disabilities and their families. As a parent carer myself as well as psychologist and researcher, my role has involved working with a group of family carers to ensure co-production is embedded within the Institute. The work has been supported by funding from the Pears Foundation.
SS: What’s different about your approach?
JG: While co-production is increasingly part of research and services, it can often feel like a bit of an add-on at the end when the key decisions have already been made. We wanted this to be different. Although IDRIS director Professor Richard Hastings and I had some initial ideas about the role of co-production in the institute, it was important that we partnered with a group of family carers to shape its development meaningfully.
We set up a development group of family carers to co-produce what co-production in the institute would look like, how it would work in a practical sense and to identify what researchers and family carers could gain through IDRIS’s research. The group includes five family carers and three IDRIS staff members – the director, the manager and me.
We haven’t seen much information on this kind of pre-work before and hope sharing it here may be useful to services and researchers more widely.
SS: What did the development work find?
JG: The development group has agreed that in future we’ll have a family carer steering group as well as a wider network that family carers can join to get involved in individual studies. The steering group members will support researchers, advise on strategy, be co-applicants on funding applications and oversee the network.
These initial meetings have been extremely helpful. Even defining things that, on the surface, seem like they should be simple needed careful working through. For example, although there are criteria for diagnosing a learning disability (including an IQ of less than 70), in reality the majority of people have never had a cognitive test and are more likely to gain a diagnosis (or not) through more holistic assessments or school history. The theory and the experience don’t always correspond.
The group’s also been key in identifying how family carers can offer training and consultancy to researchers, as well as in mentoring to keep family carers involved in co-production. The group’s experiences suggest that people with a learning disability remain a minoritised group even within the wider disability field, confirming the importance of IDRIS’s research. Ensuring the inclusion of family carers of people who have severe to profound and multiple learning disabilities has been highlighted.
SS: What useful lesson can you share so far?
JG: I was part of a wider group who developed a toolkit for researchers working with family carers and we identified seven golden rules for co-production:
- Work together as peers
- Make it meaningful
- Listen and keep an open mind
- Communicate clearly
- Pay appropriate attention
- Be sensitive
- Be flexible.
Unfortunately, for many services, what is termed co-production (which can be feedback forms) would more accurately be classified as participation or consultation. So I’d add a further one: ensure people with lived experience are involved at the earliest stage of a project.
