Survey: Consultation on the MULTI-ACT Patient Engagement Strategy

[Andy]

This was highlighted in the December Invest in ME newsletter.

Welcome to the MULTI-ACT Patient Engagement Survey
MULTI-ACT is a 3-year European project started in 2018 that aims to develop brand new tools to foster the true engagement of all stakeholders in Health Research and Innovation and maximize the impact and effectiveness of patient engagement. Engaging patients in scientific research can really make a difference, providing relevant information and helping to integrate the scientific perspective with patient’s experience of the disease. To do this, it is important to create the ideal conditions for this partnership. The MULTI-ACT project proposes the Multi-Stakeholder Research Initiatives (MSRIs) to use an Engagement Coordination Team to activate a strong collaboration among different stakeholders. This requires innovative strategies, specific skills, as well as methods and measurement systems to assess the effectiveness of multi-stakeholder initiatives throughout the research process.

With this survey we intend to consolidate the vision and include your contribution in the final guidelines.

https://www.surveymonkey.com/r/87GSGGY

 

[rvallee]

The survey is pretty demanding to fill in and cannot save progress so keep that in mind before going in.

Still, it provides a few areas to provide freeform comments, including one at the end for extended comments.

Here's mine, trying to steer the conversation towards acknowledging past failures, and learning lessons from those, as a good way forward:

There are diseases, e.g. ME/CFS, where the current clinical and research priorities have been created in direct contradiction and bullied through against explicit, and well-informed, objections of nearly the entire patient community and subject-matter experts. In those diseases patient input has been maligned and rejected with extreme prejudice, which explains the total lack of progress, even regression in this case.

To move forward with patient engagement, it is necessary to look back at those examples where patient engagement has been, and still is to this day, explicitly and contemptuously rejected. They represent incredibly rich learning experiences, examples of mistakes and failures that can improve the entire concept of patient engagement and move medicine forward.

As an example, the current treatment paradigm for ME/CFS is a mix of useless and harmful recommendations, built on definitions of the disease that have little to do with the testimony and experience of patients and decades of research by actual subject-matter experts. This is the maximum possible level of failure and years of attempts to fix this failure are still resisted by further maligning the patient community, in just about the platonic ideal of how not to conduct patient engagement.

There is much to learn from this experience and others like it, it is almost a perfect concentrate of how to fail, not just at patient engagement but at medicine in general. I think more improvements will come from looking at what failed than even the best suggestions of how to move forward, by first tackling the biggest barriers to progress, which is this case rest largely on prejudice and hostile behavior by the medical profession towards a highly disabled patient population and an anchoring on myths and misinformation that, once again, confirm the reality that things that sound too good to be true generally are.

 

[Jonathan Edwards]

aims to develop brand new tools to foster the true engagement of all stakeholders in Health Research and Innovation and maximize the impact and effectiveness of patient engagement

I am tempted to say for God's sake just join a patient website and listen.
And do something when you see professionals bending the rules to suit themselves.

 

[obeat]

More jargon.