Has health care research seemed removed from you, as if it happens from the top down? That’s understandable.
Health policy people and reformers often lament that they exist in a separate world, wondering what the heck matters to patients. So I was intrigued yesterday when a friend called to tell me that there was a notice in the Sunday New York Times inviting the public to a forum on Patient-Centered Outcomes Research in New York City, Monday, May 16, 2011. (I could not find it in the NYTimes online.) Please note important additions to this post, including information on two days of meetings.
If you are interested in health care, wonder how researchers set priorities for health care research, and especially if you have a point of view on what treatments and tests should be studied further, I urge you to RSVP and attend. Registrations must be received by Thursday May 12.
And if you wonder what health care reform might be able to do for you, focusing on what matters to patients is a big part of the 2010 health care reform law, also known as the Patient Protection and Affordability Act (PPACA), sometimes pronounced P-PACKA. I am taking pains to explain this because I worry that a language barrier exists between people who have been involved in legislation and policy and patients.
The health reform law created a non-profit Patient-Centered Outcomes Research Institute, a nonprofit organization that is independent from the government, with several different people representing different interests (a.k.a. stakeholders) who sit on a Board of Governors. This effort began in 2009 with stimulus money of $1.1 billion to support comparing available treatments, using a variety of research strategies.
The goal is to use what is called “comparative effectiveness research” or CER. It sure can sound like jargon, but when you break it down, CER rigorously compares available treatments, using a range of research methods, such as clinical trials, observational studies, systematic reviews, and structured assessment of evidence available from several primary studies. By 2014, public-private funding totaling $650 million will support the program.
I have no idea how the small group discussions about research priorities will go, but if you are interested in seeing the patient voice taken seriously in health research, you might try to make it. This forum is just one of several around the country. I will keep you posted.
The Patient Centered Outcomes Research Institute Forum
is set for:
Monday, May 16, 2011, 7:00-9:00PM. EST
Millennium Broadway Hotel New York, Gallery 8 on the 8th Floor (right near Times Square)
145 West 44th Street, New York 10036-4012
You must RSVP to firstname.lastname@example.org no later than Thursday, May 12. When registering, you should write in the subject line “NY Stakeholder Discussion Group” and in the body of your email “RSVP.” Further details on the forum are posted.