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28/52 WHY before HOW- patient involvement in research

At the moment, patient engagement/ involvement/ participation frameworks are multiplying. While certainly well-intended and at times putting in considerable efforts into collating existing frameworks, I cannot help but notice that

- frameworks are exclusively written from the perspective of the 'engager' or 'involver', not from the perspective of the 'engagee' or 'involvee'.

- an overall patronising and condescending tone - if you take a text and replace 'patient' with 'researcher' or 'physician' and see whether the end result makes you cringe is a very good test for that.

- there is a lot of focus on the HOW to interact- but with limited consideration for the motivation for that interaction: WHY are are doing this in the first place?

Assuming that the underlying intentions are well-intended and benign, increasing meaningful interaction between patient communities and researcher communities requires willingness and maturity on both sides- as well as sensitivity to each side's constraints.

Patient communities, including MPNE, often but not necessarily undergo a development process- typically, from being grateful to be invited, over resentment about the lack of recognition and impact, to strategic interaction targeting areas of maximum impact.

Validation of a person's lived experience has value and meaning as such, in particular, for the person affected. However, 'listening to the patient voice' easily becomes a purely motivational or self-congratulatory activity- 'aren't we doing valuable work'- if not followed by appropriate action.

In the current setting, the right to description, interpretation and meaning nearly exclusively resides with the engaging party. As the engaged party has limited to no ability to rectify, difficult or inopportune demands can therefore be easily attributed to a patient's 'emotional state' or 'general lack of understanding', cementing the status quo while generating both externally and internally the perception of truthful, balanced interaction.

It is usually also the engaging party that sets the frame for the normally limited interaction: for what purpose, when and how, forcing patients into a reactive, rather than proactive mode and re-enforcing the imbalance with regards to access to information and context. This in turn makes it easier to dismiss inopportune feed-back as unqualified.

Due to the imbalance of power, the main responsibility remains with the engaging party. However- and quoting E. Roosevelt's 'no one can make you feel inferior without your consent'- patient communities need to realise that the current situation is stabilised by both sides. While some patients might be content to solely share their stories, others will be frustrated by the lack of consequences. While some are grateful to be asked to join a research consortium, others will be dismayed to be yet again lumped in together with an already under-budgeted communication& dissemination work package. While some grudgingly review yet another piece of patient information material, others are greatly surprised to learn that when they finally know and state what they want, they are met with relief rather than the expected resistance. (That's btw how we in MPNE core went over a couple of years, no one has it all figured out from the start).

Then, as always, there are secondary benefits. One can feel honoured and flattered (that's usually before the work starts). There is access to information- even if there is a differential, it's still more than one would usually get. One can have an opinion- but the responsibility conveniently lies with the other side. And knowing fully well they will never dare to cede control, one can be demanding as hell without ever running the risk of having to deliver. One gets paid- even if it's for not particularly interesting jobs, at least one can off-set some Pharma funding towards those decision-makers who are sensitive towards the topic but can't be bothered to address the issue themselves. And then, one meets people one appreciates and actually likes to work with. And they care about their work and are genuinely nice people- at which point it becomes really difficult to rock the boat.

And then, invariably, one of us dies. It brings back crashing why we went into advocacy in the first place. We are not here to be just listened to or to be engaged- the reason WHY we are here is because we want to see more relevant research and research findings that are implemented faster and more effectively so that we see fewer of our community suffer and die.

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Rob @DIA Europe 2024

'I was recently fortunate to attend DIA Europe 2024. DIA is the Drugs Information Agency and is currently in its 60th year. Drug Information Association: The Global Network for Health Care Product Dev


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