I wanted to alert you to an important upcoming opportunity to make your voice heard on health care policy.
Among the health reform law’s many important provisions was one that creates a new, independent program for comparative effectiveness research. For the first time, this program gives patients a voice, and a vote, to make sure the research gets done in a way that meets the needs of all patients.
Now we need to make our voices heard. I know first hand how easy it is for the health system to tell us as patients and people with disabilities what is “best” for each one of us. I also know how hard it is to change this system so that we can tell it what is best for each one of us.
That’s why I’m asking for your help. If we can make sure this new research institute gets it right, it could give us a lot of valuable information to guide our health care decisions. But if it isn’t done right, it will just feed a system that tells us what is best for us based on an “average” result.
Each one of us is different, with different medical needs, life circumstances, and health care preferences. The opportunity we have right now is getting the research agenda to reflect these differences rather than obscuring them.
The new institute created to do this research – the Patient-Centered Outcomes Research Institute (PCORI), is holding a Board meeting on July 18-19 in Washington D.C. The Institute is run by a board of governors representing different parts of the health care system, including government, doctors, patients, medical product manufacturers, and insurance companies. As the institute gets up and running, it is vital to make sure the Board understands how important it is to work through open and transparent procedures that give full opportunity for meaningful input and involvement from our community and to define research in ways that are centered on the needs of patients and people with disabilities. You can find out more about this important issue in a one-page background document here.
Since becoming chairman of the Partnership to Improve Patient Care, I have been fighting to ensure patients have a voice in the national research agenda. Please join me at PCORI’s meeting next week and help me make our voices heard. The meeting is at the Westin Georgetown Hotel, located at 2350 M Street, N.W., Washington D.C., on:
- Monday, July 18, 1:00pm ET to 5:30pm ET
- Tuesday, July 19, 8:00am ET to 11:45am ET
All sessions are open to the public, and those who would like to speak can sign up to speak on-site on the day of the event or email firstname.lastname@example.org.
For more information on PCORI’s meeting and what you can do to help keep CER patient centered, call Sarah van Geertruyden at 202-494-5924, or email at email@example.com