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5/52 Patient Engagement versus Patients' Engagement in research.

Sometimes one has this feeling that there is something just not quite right with a concept. It's like having a stone in your shoes. Your shoes can be pretty and you can walk in them- but at every step you get reminded of that annoying stone.


The ongoing discussion on patient engagement in research left me with a similar feeling. Yes, surely it's a good idea to involve patients in research. But something about the discussion just didn't feel quite right.


Then, we as MPNE have been involved in many research projects- and many more grant writing exercises- right now, we are on our 3rd Horizon 2020 project. The thing that has bugged me for a considerable amount of time was this: I am not delusional as to believe that we are easy to work with. We are as far from the grateful-to-be-invited patient as you can imagine. We don't write letters of support for research proposals we have never seen and if we write letters of support, we write them ourselves, not just sign what someone sends us. We don't blindly recruit for clinical trials. We don't grant others access to our patient forums nor do we share surveys we haven't checked- we have developed an allergy against leading questions by now and we expect respectful language towards our audience (you'd be surprised...). We rarely review patient information material- but we've written a guide on how to produce effective patient information which you will find here. We don't wait to be asked for an opinion- we make it our job to have an informed opinion and invest considerable amounts of time in it- so you can be sure we will share it, after all that work, whether asked or not.

We seem to be the Liquorice/ Marmite equivalent for a patient organisation: people either loathe or love working with us. So we now have people who keep coming back and the question that bugged us was: WHY?


Because when asked, the answers we got were astonishingly vague. The themes we identified so far were that 1. people found us challenging 2. there was always something new to try and for everyone to get better 3. people appreciated being at our conferences.

It didn't help that we ourselves couldn't really pinpoint what *exactly* we had been doing in these projects. We had our tasks and deliverables, sure, but that didn't cover all of it. After another little fruitful discussion, we ended on 'we do whatever it takes to make this project work'.

In preparation for next weekend's Bootcamp21 on research strategy I rather by accident came across this figure of the Penta-Helix multi-stakeholder framework by Calzada. And there, in a greenish circle, it pretty much described what we have been doing all along: putting things together, fixing things, putting pressure on systems to deliver benefit to patients, facilitating structured discussions and analyses, providing outer context, sourcing missing expertise. We had noted that it wasn't enough to just have a number of motivated partners in a room. Even with best intentions, establishing effective working modes, especially with partners from different countries and cultures, is astonishingly lengthy. And as everyone is aware of it, conflict-avoidance is on top of the agenda, even at the risk of undermining the success of the project.


And that was precisely the mental equivalent of that stone in the shoe. The current discussion around patient engagement treats patients like yet another stakeholder group. As the latest one joining the establishment, established partners aren't very keen to share decision-power- this could potentially threaten their own interests. It therefore shouldn't come as a surprise that most patient engagement strategies read like taken from a manual on co-optation, often even clearly stating goals that are not in patients' best interest. For example, it is not in patients' best interest to get recruited into just any trial, irrespective of the design, relevance and quality. A trial design that was good for patients and scientifically relevant however would be. It is not in patients' best interest to cede their samples to a biobank that then just sits on them. It would be in patients' best interest to only cede samples to biobanks that ensure that their samples are used for fastest possible scientific progress. It is not in patients' best interest to share their data with institutions that operate via access-control. It is in patients' best interest to only share their data with outlets that ensure competition on brain while operating according to the latest privacy-preserving standards.

As patient organisation, this leaves us with two issues: dealing with attempts of co-optation that would ultimately undermine our standing with our own communities or allow other stakeholders to fabricate patient endorsement by carefully choosing those patients delivering the desired message.

And the fact that after all, we never join a research project 'to be engaged'. At any moment in time, some of us have progressive disease and we all know that we will loose them, just as we have watched many of our friends die before. We cannot bring back those we have lost- but we can do our part that fewer and fewer of our community will die in the years to come. We engage in research because we need better, more meaningful research and we need it faster. We need research findings that translate, that scale and that result in accessible end products. We understand partial interests but we cannot let them block progress- we know that it will be people like in our community who will pay the price.

Our community is different from other stakeholder communities. We are unified by a disease, not by a shared professional background. As disease does not discriminate, our network allows us to access expertise of the most diverse kind. And we have been optimising for years how to learn and teach to acquire the skills we miss. So we engage in research with a goal, we are willing to put in the work. And we are only too aware of what is at stake. This is what patients' engagement in research is about.


Bettina Ryll


figure from Calzada and this publication






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