Today marks the start of the PCORI Annual Meeting and COPD360social's own Clipper is participating in-person, but did you know that there is something you can do to help right from home?
PCORI, or the Patient Centered Outcomes Research Institute, funds research that helps answer questions about which treatments and healthcare services work better for different groups of people. PCORI is unique in that they require meaningful patient engagement in the research they fund, meaning the questions the research answers, the way the research is conducted and how results are disseminated are all created with patient input.
Even though PCORI is not a government agency, they were created within the Affordable Care Act in 2010 and unless Congress acts to reauthorize PCORI this year, they will no longer be able to fund new research. PCORI has funded meaningful COPD research and health systems research that is sure to benefit people with COPD. They have created a culture where it is expected that researchers form partnerships with patients from the beginning and patients play meaningful roles in shaping how research is done.
Today, as the PCORI Annual Meeting kicks off in Washington, DC, the Friends for PCORI Reauthorization coalition is hosting a series of meetings with members of Congress to talk about the importance of reauthorizing PCORI.
They are also asking for your help.Will you take 5 minutes and show your support for continuing PCORI by placing a call or sending a tweet to your members of Congress?
PCORI reauthorization is good for patients and its good for the future of healthcare.You can find your members of Congress in the COPD Action Center at https://www.copdfoundation.org/Take-Action/Get-Involved/The-COPD-Action-Center.aspx.
Enter your zip code in the “Find your politicians” box in the bottom right of the screen.
Consider using this language for your tweet or phone message.If you call, introduce yourself as a constituent and simply state you are calling to talk about PCORI reauthorization then a simple statement like the tweet below is appropriate.They will record your message and they get passed along to the member of Congress, so let’s help make some noise for PCORI!
Sample Tweet (please customize if you want to explain more of have been involved in PCORI)
#PCORI funds unique research that helps people with #COPD make better healthcare decisions. Patient engagement matters. Please support PCORI reauthorization. #Patients4PCORI #ReauthorizePCORI.
Want to learn more about PCORI and why they should be reauthorized? Visit https://reauthorizepcori.org/about-fopr/factsheet/.