Solve ME/CFS Initiative at the Patient-Centered Outcomes Research Institute (PCORI) Annual Meeting in Washington, D.C., 2019

[Andy]

From a Solve email newsletter

Solve M.E. Director of Research Programs Allison Ramiller recently attended the Annual Meeting of the Patient-Centered Outcomes Research Institute (PCORI) in Washington, D.C., where the theme was Making a Difference: Using Patient-Centered Research Results in the Real World. PCORI has funded more than $2 billion in research and related projects. The investments made by PCORI influence research to make it be more patient-centric and focused on outcomes.

Allison reports, “It’s on us as patient advocates to keep building on patient involvement and ensure true partnership in research. The PCORI conference emphasized that the focus of research should be on shifting paradigms when needed to bring treatments and outcomes that matter most to people living with chronic and other diseases. It was an inspiring couple of days and I’m excited to carry forward insights and connections from PCORI into the development of the You + M.E. Registry and other initiatives at Solve M.E.”

Solve M.E. supports our coalition partners at Friends of PCORI Reauthorization for nationwide advocacy efforts to successfully #ReauthorizePCORI. PCORI is responsible for $2.4 billion in research investment since FY2010.

Watch all of the recorded PCORI sessions here.

 

[rvallee]

Using Patient-Centered Research Results in the Real World

Looking forward for this to begin. Any day would be great. But this seems at odds with:

It’s on us as patient advocates to keep building on patient involvement and ensure true partnership in research

As long as it's up to patient advocates to do the hard work, it means the medical profession is merely tolerating it and walking into it backwards. Medicine is still currently mostly, and in our case strictly, supply-side and one-way. Demand and need do not factor into most decisions. Everything is still by physicians and for physicians. Patient input is only welcome within strict parameters that comply with current paradigms.

Medicine would seriously benefit from a basic understanding of economics. Supply-and-demand, opportunity costs, law of diminishing returns, all things where medicine is failing badly. All massively important concepts that would solve our most pressing problems.

Because the day ME research becomes patient-centered is the day the psychosomatic model disappears in a massive implosion. It would also kill the entire MUS movement and provide massive embarrassment to some bigwigs. Patient involvement is still being resisted for those reasons. I will always remember the reaction in the medicine Reddit forum following the changes to the CDC information package: howling fury at how dare patients get involved, any involvement at all, in the purity and unfailable perfectly neutral objectivity of medical science?!

Good on SMCI to pursue this. It's just sad to hear all this talk about patient engagement and, as usual, be on the exemptions list where it's strictly forbidden because we give answers that contradict a belief system with enormous sunk costs. Keep at it, though. It's just a matter of time.

 

[ahimsa]

For folks who more information on the background of the PCORI group (I had never heard of them but maybe I'm in the minority?) I found this article in Medpage Today (from Nov 2018).

https://www.medpagetoday.com/meetingcoverage/pcori/76081

It's mostly about whether the group will be reauthorized this year but this paragraph talks about creation of the PCORI:

PCORI, which had a budget of $480.9 million in fiscal year 2018, officially came into being in 2010 as part of the Affordable Care Act, with a mission to assist patients, clinicians, purchasers, and policymakers to make better-informed healthcare decisions by advancing the quality and relevance of evidence about diseases and health conditions.

As an aside, it's nice to see bipartisan praise from Congress members in this article.