Your tax dollars fund medical research, but your say in what research actually gets done is exactly…zero.
Now, a new, Congressionally-authorized nonprofit born of the Affordable Care Act is proposing a different model: What if medical research were driven not just by profit-seeking drug makers or academic researchers with niche interests? What if, instead, research pursuits bubbled up from patients and their caregivers based on the concerns, confusion and questions that arise from real-life dealings with the health care system?
The Patient-Centered Outcomes Research Institute (PCORI) is the first, and clearly the most ambitious, publicly-funded effort to integrate patients and caregivers more directly in figuring out what works in health care. They’ll be able to push for what they need most, whether it’s more effective asthma treatments, clearer information on childhood vaccines or preventing falls among the elderly.
Eventually, a new body of evidence — by, about and for patients — will be easily accessible to anyone trying to navigate the health care system or seeking reliable data on preventing, diagnosing or treating an illness, says PCORI’s executive director Dr. Joe Selby, formerly the director of research for Kaiser Permanente, Northern California..
What’s Best For Me?
In a radical rethinking of what constitutes “health research,” patients are central to this endeavor and participate in every stage of the process: from generating and selecting study topics to determining the most effective strategies for communicating the results (not everyone subscribes to The New England Journal of Medicine, the thinking goes). PCORI has already spent $31 million to fund 50 pilot projects (out of 856 submitted) and it estimates $427 million in research commitments will be made by the end of 2013. By the close of the decade, PCORI expects to invest about $3 billion in research.
Currently the group is soliciting specific questions from patients and caregivers nationwide that might ultimately be developed into research projects. The questions can be on anything with a clinical focus: basically, any question that begins: “What’s best for someone like me?” qualifies. Continue reading