Blog 2 of 4 in the Insights From Researchers on Co-production blog series
EPIC blogs usually focus on parent, teacher and clinician audiences. This series of blogs are the findings from a workshop for researchers entitled Overcoming barriers to co-production with children and adults with neurodevelopmental disabilities which took place during the Neurodevelopmental Disorders Annual Seminar 2022 held in Edinburgh. Following on from this series we will have the Insights from a Lived experience on Co-production blog series which will focus on getting involved in decision making about research from a parent perspective.
Disabled and neurodivergent people have historically been excluded from the decision-making process about research about them. For this reason, it is important the research team take trust and transparency very seriously. It is important for the researcher to be transparent about which decisions have already been made and restrictions imposed by funding, research design, or time. If trust is lost, members may drop out, not take part in future involvement work or discourage other people from involvement. In this way, tokenistic involvement is damaging and makes the wedge between the community and researchers bigger. Furthermore, as Emma Pauley (invited speaker at the workshop, lived experience with co-production) pointed out, it can also negatively affect the self-esteem and mental well-being of members of the community who give up their time to take part in co-production, only to realise at a later point, none of their feedback has been taken on board.
Setting expectations about the co-production work is key to developing good working relationships. Before agreeing to take part, the co-production group should know what is expected of them, the time commitment, and how much they’ll be paid. Bagley and colleagues (2016) provide an example of a Terms of Reference document which could be used to lay out expectations. I think for a larger scale project perhaps using a document like this could be sensible, however for a small scale project, when paper work could be off putting for people with neurodevelopmental conditions, simply setting expectations verbally and/or by email may be more appropriate. Whichever way you decide to set expectations, being clear about how much power the co-production group will have is crucial. Phrases like “consultation”, “genuine co-production”, “equal partnership” “participatory research” are often used to describe different levels of power (although it seems people often mean slightly different things when they use these terms and terms have different connotations). It is important to explain what you mean by these terms when having meeting with the your research team, the co-production group, and when setting out expectations.
Describing your positionality when first meeting your co-production group can be helpful in creating trust. For example, explaining what your background is, if you are neurotypical/neurodivergent/disabled, explaining how the idea for the project developed, where you are in your career, and/or how you came to be interested in this work. When recruiting a new co-production group, it can be useful to share a document, or website explaining the research team’s recent work or previous collaboration work (Fletcher-Watson et al., 2021).
Payment also relates to trust as fair payment communicates respect. In some cases, a co-researcher may want authorship instead or certain groups might need their travel paid for in advance. For this reason, a conversation at the start about payment should happen. The NIHR website below has guidelines on payment rates and what to do if they are in receipt of state benefits, job seeker allowance, or carer’s allowance to avoid reduction.
Researchers will make mistakes. But what’s important is owning up to the mistakes and apologising. Nicolaidis and colleagues (2019) point out for trust to build and be maintained there must be a willingness to learn and forgive.
References and more resources:
Bagley, H. J., Short, H., Harman, N. L., Hickey, H. R., Gamble, C. L., Woolfall, K., Young, B., & Williamson, P. R. (2016). A patient and public involvement (PPI) toolkit for meaningful and flexible involvement in clinical trials – a work in progress. Research involvement and engagement, 2, 15. https://doi.org/10.1186/s40900-016-0029-8 <- excellent resource for thinking about patient and public involvement for a trial
Fletcher-Watson, S., Brook, K., Hallett, S., Murray, F., & Crompton, C. J. (2021). Inclusive Practices for Neurodevelopmental Research. Current Developmental Disorders Reports, 1-10.
Nicolaidis, C., Raymaker, D., Kapp, S. K., Baggs, A., Ashkenazy, E., McDonald, K., … & Joyce, A. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism, 23(8), 2007-2019.
Recently updated payment guidelines:
This workshop was funded by the University of Edinburgh College of Medicine and Veterinary Medicine Public Engagement Seed Fund through the Institutional Strategic Support Fund.