Bettina Ryll
Requests for feed-back on anything from information material over surveys to policies and for participation in stakeholder forums have dramatically increased in the last years.
While at first sight a positive trend, we in MPNE have identified a number of severe limitations undermining the ROE, Return On Engagement, for our community:
Questions and requests are often formulated in a very narrow way and only touch on superficial but not essential aspects, reflecting a preconceived notion of what patients should have an opinion on which does not necessarily reflect the view of our community.
Interpretation and integration of comments and input is left to the one collecting the feed-back, with limited feed-back loops. Standard comments we here are 'there was no time to integrate your feed-back' and 'the copy was already approved by the experts, we cannot change anything'.
The desire for a 'one size fits all' reply which simply misrepresents the reality and diversity of patient communities. The same aspect can be perceived entirely differently, depending on e.g. your socio-economic background, your educational, your gender or the country you live in, over-simplification thereby fails entire communities.
Many issues- especially those worth commenting on- are complex in nature, like therapies with entirely novel mode of actions or the upcoming European Health Data space. Even with a relevant professional background, it takes time, reading, reflection and often input from other areas of expertise to develop a well-founded and substantiated position.
Patient communities are unrivalled in understanding the impact for patients and their families- we are living it. However, when it comes to root causes and possible solutions, we on our own are not much better than other stakeholder communities in isolation.
In a nutshell, we found that complex issues needed substantial effort to be explored in depth and that we needed ways to accurately capture and depict the diversity of and the impact in our community to work backwards to problems and then, solutions. And that all that was too resource-intense to be conducted for some external consultation process most likely to ignore our input anyway- and the motivation for our MPNE patient consensus meetings.
So far, we have conducted 2 of those, one on The Essential Requirements for Uveal Melanoma Guidelines in 2020 and the Patient Consensus on Data, AI and data-dependent business models within iToBoS, a Horizon 2020 project in which MPNE is consortium partner, in January 2024. We are now preparing for our 3rd MPNE patient consensus, this time for Advanced Melanoma- a good moment to reflect on our thinking and the underlying process.
So far, we have followed something like this:
Understand the impact on patients and their families and capture diversity in system.
Identify points that are particularly problematic and/or actionable.
Gather expertise and complementary perspectives around those points, discuss with external stakeholders.
Reflect and discuss internally.
Formulate consensus statements and share.
So let's see what we think about it after our December meeting!
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