1. PIPC Holds 6th Annual Forum in Washington D.C., click here to view a summary of the forum.
2. PCORI Blog: Keeping Patients at the Center of All Stages of Clinical Research, click here to view the blog post.
3. University of Maryland Project to Refine Best Ways to Give Patients Voice, click here to view the release.
4. UK: When Doctors Don't Do Numbers, click here to view the article.
On December 3, the Partnership to Improve Patient Care (PIPC) hosted a forum for experts to discuss patient-centered research and the role of the Patient-Centered Outcomes Research Institute (PCORI) in the health care system. The discussion was divided into two panels, with the first focusing on PCORI’s legislative history in relation to patient-centeredness and the second concentrating on the role of dissemination in engaging patients. The panels consisted of representatives from patient advocacy groups, former Senate staffers, and an official from PCORI, with PIPC Chairman Tony Coelho acting as moderator. Topics discussed include efforts to include patients in the research process, addressing disparities in research, and ensuring that research is disseminated in a way that allows patients and clinicians to use it in their decisionmaking process. Click here to view a summary of the forum.
2. PCORI Blog: Keeping Patients at the Center of All Stages of Clinical Research
As PCORI’s Executive Director Dr. Joe Selby comments on The PCORI Blog, “In a new viewpoint in JAMA, the Journal of the American Medical Association, I, with colleagues Laura Forsythe and Harold Sox, describe PCORI's distinctive approach to engaging a range of stakeholders in working toward our shared goal—generating evidence that can help patients and those who care for them make informed choices about which treatments might work best for them. The article, available free, notes how this approach guides our funding decisions and shapes the way the resulting clinical effectiveness research studies are conducted.” Click here to view the blog post.
3. University of Maryland Project to Refine Best Ways to Give Patients Voice
A recent news released from the University of Maryland outlines a key award for the university to examine how to engage patients in research. “C. Daniel Mullins, PhD, professor and chair of the Department of Pharmaceutical Health Services Research (PHSR) at the University of Maryland School of Pharmacy, has received a contract from the Patient-Centered Outcomes Research Institute (PCORI) to design continuous processes for researchers and health care professionals who seek to engage patients in key aspects of the research process...‘Though organizations like PCORI have made progress in advancing PCOR methods, there are still gaps in the methodology for consistently and effectively incorporating the patient voice in the design, conduct, and dissemination of PCOR studies,’ says Mullins… Through the contract, Mullins and his team will provide guidance to PCOR researchers across the United States on which set of patient engagement methods they should use throughout their PCOR studies and which resources are required to achieve meaningful and sustained engagement. The end goal is to guide potential refinements of PCORI’s patient and stakeholder engagement rubric.” Click here to view the release.
4. UK: When Doctors Don't Do Numbers
Sharing an interesting perspective on ‘value’ from the United Kingdom, Dr. Amy Price of the Centre for Evidence-Based Medicine comments “I was a recipient of ‘values’ based medicine without evidence. It was a cruel task master that ate a lifetime of savings while holding out the false promise of a ‘cure.’ It was worrying the physicians who thought they were giving their best did not know the incidence, prevalence, or false positives for disease. They embraced the concept of treating patients and helping them make ‘shared decisions’ about risk. I heard them dismiss evidence-based medicine with disdain as ‘those bean counters who eat their own’ and ‘are always reporting problems instead of providing solutions.’” Click here to view the article.