Updated: Aug 14, 2022
Sometimes one reads what someone else has written and thinks that is *precisely* putting into words what has bugged me for a while and that I just couldn't articulate.
The article Public Involvement in Global Genomics Research: A Scoping Review by Jack Nunn and Co-authors is such a piece.
Something that always sat uneasily with me is what people actually try to pass out as 'patient involvement'. I quote the authors here
'Involving people in genomics research was defined as the “active involvement” in shaping and guiding research, rather than only providing data'
(figure from the publication)
Asking patients to complete surveys, donate samples, share or hand over their data, join clinical trials, fundraise for research without giving them any say into what is studied, how it is is studied or analysed, how the data and insights are used to me never rang true of involvement. Similarly, user-testing of health applications or services. User- testing is nothing new but we wouldn't advertise a tooth paste or a soup as 'co-created with the end-user', would we?
I am not against passive involvement as such- no one has time and energy to double and triple-check everything in life. I will happily support researchers and clinicians I know to deliver good work and whose intentions I trust. That however makes trust an essential component of passive involvement, so maybe not surprising it shows up as 'facilitator of involvement' in this publication. This isn't helped by the fact that trust is hard and time-consuming to earn and easy to lose.
The issue for me comes when trust is demanded without making any attempt to earn it. Our patient community has seen too many terrible surveys, biobanks that are rather bioarchives sitting on ageing samples than banks sharing samples to find solutions for patients in need, data siloed for personal gain- just try to get data out of some registries and you will see- shady clinical trials and research money spent on pet projects rather than the next really relevant problem. Add our broken incentive system of publish & perish, commercial and personal interests and the mix inspires despair rather than trust. At least not: blind trust.
In addition to passive and active involvement, the authors add another category: consequential involvement.
“Consequential” involvement is when involvement contributes to the research process, as distinct from involvement which is ignored or not incorporated''
It very acutely captures one of our recurring questions: how do we know that what we do makes any difference? The authors admit that 'consequential' is hard to measure and that definitely rings true with our own experiences.
Passive involvement- provided it truly helped patients- could be acceptable as long as it was minimally time-consuming and put no one- patients, their families, societies- at risk. Active involvement however quickly tends to become very time and resource- consuming- so better only engage in activities that are consequential with regards to what matters to our patient community. Just how do we know?
Patient engagement today tends to be solely evaluated from the perspective of 'the one who involves patients'. However, it takes two to tango- so as patient community, it is time for us to reflect on how we can ensure that as much of our engagement as possible is consequential. Because, if we spend a lot of effort on something that makes no difference to patients- that's not active engagement, that's a waste of our time.