Involving patients in a meaningful way in research that matters to them is a daunting process. The Patient-Centered Outcomes Research Institute (PCORI) has been trying. Yesterday, I received notice that PCORI is about to launch workgroups in five priority topics. You can register for the workgroups, which are open to everyone, and participate in them via webinar/teleconference. You can send questions in for consideration via email to targetedPFAworkgroup@pcori.org or via Twitter @PCORI.
What Makes a Stakeholder?
It is not explicit on PCORI’s website who can partner with PCORI at the front end in developing research priorities like this further and becoming a research partner. To further public engagement, this should be clearly stated.
For example, can an individual or advocacy group that deals with environmental triggers for asthma in Harlem help shape tomorrow’s agenda, or must it partner with an academic medical institution or drug company that does clinical trials? What does patient engagement mean for PCORI as this process moves ahead.
So far, I don’t know what the answer is, but it is an important question that I hope PCORI makes transparent on its website and elsewhere. I think that this is truly an opportunity for PCORI to engage individuals and groups that work with people committed to answering research questions to affected patients and communities.
Tomorrow’s teleconference (Friday, March 1) is an all-day meeting, scheduled from 9am to 4:15 pm EST. It will address:
Treatment Options for Severe Asthma in African-Americans and Hispanics/Latinos
How asthma develops. Credit: National Heart, Lung, and Blood Institute, National Institutes of Health.
You can read about the schedule and see the speakers. You can register for access to the webinar here and if you want to comment, it looks like the live commenting will take place midday.
I am disappointed to see the disproportionally few participants speaking at tomorrow’s event representing people with asthma in African-American and Hispanic communities. Let’s hope for more public engagement in the future.
Other Work Groups Scheduled
PCORI will also take up four other research topics at work group meetings next week and through April 16th. They include: Treatment Options for Uterine Fibroids (March 5th), Preventing Injuries From Falls in the Elderly (March 12th), Treatment Options for Back Pain (March 21), and Obesity Treatment Options in Diverse Populations (April 16th).
The workgroup meeting is open to the public through a free webinar and teleconference. Individuals can register through the PCORI website: http://www.pcori.org/events
A public comment period will be provided from 12:45-1:00 p.m. ET for individuals to provide comments or questions through the teleconference line. Instructions on how to provide will be explained during the event by the workshop’s moderators and the teleconference administrator.
In addition to the public comment period, individuals can ask questions or provide input through:
• A page on the PCORI website that allows you to ask questions and upload any supporting information you may have
• By email to asthma@pcori.org
• By using the chat function on the webinar page during the meeting.
• By joining the conversation on Twitter during the meeting using the #PCORI hashtag
Comments and questions about this topic can be provided to PCORI through Friday, March 15. All of the input received will be considered by PCORI as it develops targeted funding announcements to address this important health issue.