A guest blog from Kate Boddy, Research Fellow in Patient and Public Involvement…
We raise our glasses to toast the completion of the PaReNt study (Hunt 2019). We are celebrating the success of the study by taking the parent advisory group out for dinner. Walking home, overly full and warmed by fond farewells, I reflect on the ending of this study. It feels different to the usual last encounter with a public advisory group where loose goodbyes might be said with no real thought given to the fact the collaboration is finishing, that a relationship is ending. This time there is a definite sense of completion, a feeling that we have ‘ended’ the project well; sending off our collaborators as we might a well-liked colleague. This feeling is compounded by an email the next day from one of the parent advisors whom we shared the meal with, thanking us for ‘celebrating the success’. The difference is ‘reciprocity’; throughout the project and especially at the end we strove to create a reciprocal relationship with the parent advisors.
A reciprocal relationship between researchers and those involved, is acknowledged to be important for the involvement to be successful. Indeed, some consider it to be a defining aspect of public involvement, the key factor in ensuring engagement happens (Hughes 2018, Gottweis 2011, Shippee 2015). Yet, while researchers state it’s importance and it regularly pops up in the abundant lists of public involvement principles (e.g. Gradinger 2015, Haywood 2017, PCORI 2014,), there is little discussion about what a ‘reciprocal relationship’ actually is or, more fundamentally, how to go about enabling one to flourish. There is no guide to reciprocal relationships in research collaboration.
What do we mean by reciprocity? There’s probably a good reason why there are few definitions of ‘reciprocal relationships’ about; it seems it’s slippery and hard to pin down. A quick sample of definitions produced this word cloud with the emphasis on developing equal relationships based on mutual respect.
Personally I like INVOLVE’s ‘does what it says on the tin’ approach: Reciprocity – everybody benefits from working together.
If we don’t strive for reciprocity, what’s the alternative? That we accept the relationship will always be one sided? There are consequences to this approach. If we don’t put effort into a quality relationship where all involved can benefit we can be in danger of continuing a ‘Fund and Forget’ mentality where we conduct the research, take benefit from the efforts of those we involve, and move on to the next funded project without a backwards glance to the community or group who gave us so much. This leads to disengagement. I’m minded here of the thought provoking blogs from RoseAnnieFlo. Speaking from the perspective of a research participant, but with direct parallels to the world of involvement, she searingly states “I need to break it to you that research participants don’t disappear in a puff of smoke after your interviews are complete. Your projects have a real impact on our real lives” What Rose describes sounds a lot like Research Fatigue. The cause of Research Fatigue is directly attributable to how researchers manage their relationships with those they research/involve. Reciprocity shouldn’t be seen as a fluffy extra, if we ignore it we risk doing real damage to individuals and communities.
So how can the PaReNt project experience, which started with a small shift in attitude, an intention to act reciprocally with our collaborators, how can this become the rule rather than the exception? The issue of reciprocity isn’t just for researchers to resolve. The infrastructure that supports research needs ‘a radical shift in current practice’. Funding for projects needs to have flexibility built in to enable researchers to respond to community needs giving them the freedom to make reciprocity happen. And what about that researcher relationship guidebook? An exploration of the mechanics of reciprocity would be a good start. Yes; more research is needed 😉 …Watch this space!
https://doi.org/10.1016/j.jnn.2019.03.011
Evidence Synthesis Team 
May 8, 2019 at 8:43 am
Interesting post, but as I said in personal correspondence after reading the first draft, I’m afraid I don’t agree with your construction of my own experience as ‘research fatigue’. The quote you used from my blog comes at the end of a paragraph about research quality & integrity. For me, research participation has been an *awakening* to the some pretty poor standards and I think the problems I raised need to be dealt with primarily by more robust research training, supervision, peer review and, ultimately, tighter regulation of researchers.
I’ll blog on this in more detail when I have time.
LikeLike
May 8, 2019 at 2:18 pm
Thank you for this clarification @RoseAnnieFlo. I loved your blog and would not want to misconstrue your experience. Brevity didn’t allow a more nuanced definition but I guess I view Research Fatigue as a broad, umbrella-term describing the state of not wanting to participate in further research due to negative experiences. These experiences could include a lack of change or being over-researched, as described by the Clark article I link to, but couldn’t they also include becoming jaded because of poor-quality research or poor ethics? Whatever you call it, there is very little written about it and I look forward to reading your blogs in future.
LikeLike
May 9, 2019 at 2:07 am
Interesting blog, thank you. Would agree with all the points you make but what really interests me is how we achieve reciprocity. As an “ involved “ patient I don’t have the power to do or decide anything unless I am “ allowed “ to. It bothers me that someone else has to decide whether to involve me meaningfully, including making sure the relationship is truly collaborative.
Until we have more equal power relationships things won’t truly change. There are some pockets of excellence but I would agree with Rosie Annie Flo about the pretty poor standards.
LikeLike
May 13, 2019 at 7:47 am
Thanks Lynn. Yes, I agree with you, the power-relationship is unequal and frustrating. I am also really interested in ‘how’ we achieve a reciprocal relationship; what is it and how do we do it?
LikeLike