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Showing posts with label public comments. Show all posts
Showing posts with label public comments. Show all posts

Tuesday, March 13, 2012

Comments needed - exp March 15th - Patients: Your Researcher Will See You Now!--Kathleen O'Malley



 CLICK HERE TO SUBMIT COMMENTS to PCORI.

Patients: Your Researcher Will See You Now!--Kathleen O'Malley:

Guest blogger Susan Woods, a physician and SPM board member, urges patients to help shape PCORI’s draft National Priorities for Research and initial Research Agenda, and offers her own comments here. The public comment period ends at 11:59 pm EST on March 15.

Patient voices are needed now!

The Patient Centered Outcomes Research Institute (PCORI) is soliciting input about patient-centered outcomes research. We blogged about this when they were seeking people to apply to be participants.

           Now the deadline to submit your comments is almost here.

PCORI is an independent, non-profit organization established by Congress through the 2010 Patient Protection and Affordable Care Act. Its mission is to help people make informed health care decisions by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader health care community.
The legislation creating this group, governed by a 21-member board, is fascinating. Patient advocates must be part of the process: “For identifying research priorities, they take into account…a number of factors including variations and health disparities, the potential for new evidence to improve patient health, well-being, and the quality of care…as well as patient needs, outcomes, and preferences, the relevance to patients and clinicians in making informed health decisions….”
This is enlightenment in medical research. The law also states:
“All funded studies will have a strong orientation to the patient perspective and all will have patients involved in the development of the research, its governance and oversight, and its dissemination strategy.”