How should patients be integrated into the NIH process?
The US National Institutes of Health has made several promising, public steps forward in recent months, announcing a new commitment to research ME/CFS, hinting at possible new drug trials, and promising to use strict criteria including the Canadian Consensus Criteria to select patients for their intramural studies.
Yet the premature publication of the study protocol and the involvement of Dr. Brian Walitt and others who have previously taken a somatoform or psychosomatic view of the disease have raised serious concerns among many patients about the NIH’s capacity to understand the patient community and execute on the findings of the IOM report and the P2P process.
In recent weeks, both Dr. Avindra Nath and Dr. Francis Collins have publicly stated that patient involvement is coming. At the CDC grand rounds last week, Nath citing the legacy of ACT UP affirmed that, “input from the patients is absolutely critical for any disease that you want to study. They’re the ones who really experience the symptoms and live it.”
Yesterday, Vicky Whittemore laid out in a conversation with Carol Head of Solve ME/CFS a few possibilities for patient involvement:
1. Include an open period during each Trans-NIH Working Group meeting in which patients can ask questions and offer their feedback;
2. Include advocates on the smaller working groups created in conjunction with the study; and
3. Hold regular teleconferences throughout the study so that community members can receive updates on progress from the investigators themselves. The first conference call is expected to be announced this week.
While they are formulating their plans, we want to know what you think about what the model for patient involvement should look like. What kind of relationship with the NIH would you like to see? What would signal to you that they are serious about working differently than the US federal government ever has with this disease?
Please leave your comments below.