Co-production and involvement in health research: why aren’t we showing our working?

Centre co-producers, Jordan and Lynn, reflect on personal co-production, involvement experiences, and pose (many) difficult questions about how the Collective’s core values of Challenging, Transparent, Inclusive and being Human can be put into practice.

Earlier this year, Wellcome Trust published a report detailing what researchers think about the culture they work in. Key findings included issues with job security, lack of support and expectational pressures. Jeremy Farrar, Director of Wellcome Trust, stated:

“These results paint a shocking portrait of the research environment – and one we must all help change”

The report suggests that:

“Research culture is best when it is creative, supportive and collaborative – and in making cultural change, these three qualities will be key as well”

Notably, the report did not look at the experiences of public contributors to health research. What might it have found if it did?

Publishing taking priority over people

This blog is informed by our personal experiences, but it is not about us. We wanted to examine the issues of research culture, power and hierarchy and how they impact public contributors when co-producing and becoming involved in health research. Current literature acknowledges wider issues of power imbalance, institutional hierarchies and research culture as barriers to meaningful involvement and co-production (our sources are shared below). As with the Wellcome Trust report, the majority of this published literature highlights the researcher perspective, detailing pressures from funding bodies, heavy workloads and the “publish or perish” culture of academia. All fair but, the possible solutions, and often the patient perspective, remains undocumented. The irony appears to be that public contributors do not have the power to publish about our lack of power!

Scientific method relies largely on the principles of reproducibility and replicability, in short, every detail must be documented for future reference. From this we can see where we may have gone wrong and learn from our mistakes, yet this level of transparency is often missing from co-production and involvement in research. Why is this the case? Why don’t we show our working? Do we ultimately present a sanitised version of the involvement process, omitting challenges, disagreements and compromises which are actually part of being human? Is the current research culture such that documenting disagreements and challenges is seen as a negative, rather than a positive attempt to continually improve research while promoting equal relationships with open and honest dialogue?

Power and process: the importance of showing our working

We would argue that in the dawning of the new era of co-production, which is fundamentally about equal partnership, the issue of power imbalance has become more pronounced. Crucially, this doesn’t mean personal or individual power but rather how much power public contributors have over their involvement. For example, what is written in funding application forms (particularly in the plain English sections), how their feedback is used and reported and if disagreements and challenges are documented. Are public contributors allowed to comment on arguably more contentious issues, such as what the primary outcome of the research should be, how outcomes should be measured and what methods should be utilised? How many of us can think of a situation where we were told we were part of a co-produced application yet the basic principles of working together, sharing power and responsibility were not adhered to? Who should have ultimate ownership of the patient public involvement section and plain English summary in grant applications? Who should have the final say on their content and wording? Should we be the ones writing about our involvement or be content to have one of the research team describe it for us?

As public contributors we make an emotional and intellectual investment in co-production and involvement. What happens then when we raise concerns and they aren’t adequately addressed by the research team? The meaningfulness and impact of involvement and co-production relies on trusting relationships between researchers, practitioners or clinicians and those with lived experience. What happens if this relationship breaks down? What happens if no resolution or compromise can be found? Who has the power to have the final say? Do frameworks exist to raise these issues elsewhere, for example with funders, and in doing so do groups or individuals risk their reputations, perhaps even being seen as whistle-blowers? When all else fails, is the only power that public contributors retain, the power to walk away from research they have lost faith in?

Let’s get transparent!

Certainly, challenging situations arise in any and all workplaces, with systems and procedures often in place to accommodate swift resolution or compromise. However, we would argue that these appear to be lacking in health research. We reflected on some challenging situations that we have experienced and started to think about things that may have helped. Do we need written agreements for public contributors when commencing co-production and involvement? These could be co-produced, detail expectations on both sides and provide a framework for settling any disagreements. How much discussion do we have about shared values and potential moral/ethical issues when embarking on a co-production project? Furthermore, what role should funders play? Should they take what is said in the patient public involvement section of grant application forms at face value? Should they check with public contributors to ensure that what is documented regarding the co-production process actually happened? Do we need audits of ongoing involvement, especially for 3-to-5-year research projects where the budget allocated to involvement can be significant? Funded grants have research objectives and milestones, so should we also set involvement milestones and ensure they are adhered to?

Additionally, could greater effort be made by funders to create more space in application forms to document the conversations, challenges, compromises and disagreements inherent in co-production and involvement in an open and honest manner? Research teams often supply annexes to applications, such as letters of support, so should we provide evidence of a warts-and-all co-production process in this way? This would also help in the process of evaluating co-production and involvement as well as providing insight into how any disagreements can be resolved.

Let’s challenge the status quo

Our goal for this blog was to share our perspective on the barriers to transparent co-production processes and to challenge the existing hierarchical structures in health research. This is about research culture, not individuals. If we do not challenge and attempt to change the status quo then we won’t change people’s individual experiences. This is crucial at this moment in time when the lack of inclusivity and diversity in research is receiving such attention. Are we inviting underrepresented and seldom heard groups into a co-production and involvement environment which is not fit for purpose? The emotional fallout from a difficult experience can be immense, especially when the only power we feel we have is the power to walk away.

Ultimately, these issues affect everyone in research, not just those of us with lived experience. We would argue that strong, meaningful co-production and involvement with public contributors who are expected and supported to be critical friends will ensure that only relevant, excellent research is funded. The overall culture and expectations of research needs to change, and we hope that this blog stimulates debate about these issues. We look forward to some hopefully challenging conversations!

Thank you,
Jordan and Lynn

As Co-Production Collective we want to continue exploring different perspectives on how we can challenge research culture so look out for more blogs on this in future – we thought it would be interesting to hear from a researcher or funder perspective for example so let us know if you would like to input into this. We’d love to hear from you whoever you are though, please feel free to share your thoughts in the comments or email us at coproduction@ucl.ac.uk 

Some documents that we read whilst writing this blog:

Boylan A‐M, Locock L, Thomson R, Staniszewska S. “About sixty per cent I want to do it”: Health researchers’ attitudes to, and experiences of, patient and public involvement (PPI)—A qualitative interview study. Health Expect. 2019; 22: 721-730. https://doi.org/10.1111/hex.12883  

Chambers E, Gardiner C, Thompson J, Seymour J. Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review. Palliat Med. 2019; 33(8): 969-984. https://doi.org/10.1177/0269216319858247

The PARTNERS2 writing collective. Exploring patient and public involvement (PPI) and co-production approaches in mental health research: learning from the PARTNERS2 research programme. Res Involv Engagem. 2020; 6: 56. https://doi.org/10.1186/s40900-020-00224-3