In this blog post, we are going to explore how patient and public involvement (experts-by-experience) has been evaluated for the Making Positive Moves (MPM) project. We want to bring to you the views of the research team and the experts by experience who have been involved in the project about how their views have improved or developed the project.
Patient and Public Involvement Evaluation for Making Positive Moves
For this blog post, we are going to explore how patient and public involvement has been evaluated for the Making Positive Moves (MPM) project. We want to bring to you the views of the research team and the experts by experience who have been involved in the project about how their views have improved or developed the project.
What is Patient and Public Involvement?
Patient and public involvement refers to the partnership between members of the public and the researchers. This means thinking about how members of the public work alongside the research team to contribute to the research, this is something that can be done in a number of ways across the entire span of the research project. For instance, it could be that members of the public/ experts by experience are involved when writing project proposals when applying for research funding, when developing research materials, analysis or thinking about how to disseminate findings for the research.
How was patient and public involvement evaluated for Making Positive Moves?
Interviews were conducted with members of the expert-by-experience consultation group (EECG) and the research team. A total of seven interviews were conducted, including three experts by experience and four members of the research team. Interviews lasted up to an hour and the transcripts (written versions) of the interviews were looked at to see if we could pull out any common themes.
Summary of Findings
From an expert-by-experience perspective, they expressed that they felt heard, their ideas listened to and that their ideas genuinely made a difference to the project. They also spoke about how being involved in the research has created new opportunities for them to develop their skills in a way they hadn’t thought possible. They also expressed that they would like to continue engaging with projects like this and would like the group to expand so that a wider range of experiences can be incorporated. There was a general unity in the expert-by-experience interviews.
For the research team that was interviewed about expert-by-experience views, there was a little less unity in their responses, and this could be due to the vastly different roles that members of the research team hold. Overall, there was a lot of positivity around the value the research team hold about experts -by – experience involvement and their input in developing resources and materials for the project. There was a general point of view from the research team that highlights how the EECG has really functioned to consult about ideas for the project and that over time the research team has had more ideas about how to move towards co-production with other side projects associated with MPM and the dissemination strategy.
For future ideas about PPI, both experts by experience and the research team felt that having more opportunities to meet face-to-face would encourage better engagement within the EECG. Both groups also felt that having a more diverse group or bigger group for the EECG would encourage the sharing of ideas and increase the number of ideas generated for the projects. It was also suggested that a bigger group with a range of experiences would help increase the likelihood of the EECG being representative of the population that is being researched in MPM and future projects.
The research team further built on the ideas above, most of the ideas were linked to taking steps closer to co-production but also highlighted some systemic barriers that exist within the research sphere. The research team largely wanted more integration of experts-by-experience in the project i.e. being involved in analysis, data collection and more embedded time in the research team. However, barriers to this exist within payment structures, timings of bids and research grant calls being very short and also how accessible research structures are for people with learning disabilities.
Recommendations
- Create a dedicated patient and public involvement role within the research team – So someone has general oversight of this rather than this being a shared responsibility within the team.
- Increasing accessibility in organizational processes – making it easier for people with learning disabilities and autistic people to be involved in projects i.e. grants, research funding calls and internal processes.
- Having a network of expert-by-experience groups that could be consulted at short notice when responding to research calls with short time frames.
- Exploring other avenues for support i.e. Clinical Psychology Trainees or other courses where there is a core research element to training. This could support scoping reviews, focus groups or research exploring what particular groups of people would like researched.
- Having a larger expert-by-experience group to increase idea generation, participation, more diverse representation.
If you would like to share your views or hear more about this, please get in touch:
hello@makingpositivemoves.org
