Health Care Research Can Be Patient-Centric Too
December 15, 2015 | By: Ed Ryan
Ed Ryan is Senior Legislative Advocate, Volunteer, AARP Pennsylvania and Representative to the Consumer Advisory Council of The Hospital & Healthsystem Association of Pennsylvania
As an appointed volunteer representing AARP Pennsylvania on the Consumer Advisory Council of The Hospital & Healthsystem Association of Pennsylvania (HAP), I am dedicated to improving the quality of life as we age. HAP and AARP are trusted advocates for positive social change, including healthy lives and better experiences in hospitals.
Another valuable partner committed to improving the health experiences of individuals and the culture of health providers is the Patient-Centered Outcomes Research Institute (PCORI).
When we think about the health care research process, we usually think about scientists and other research-related professionals. PCORI is changing that dynamic. PCORI was created in 2010, through the Affordable Care Act, “to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policy-makers to make informed health decisions”.
The organization funds research and supports work to determine which health care options available to patients and their caregivers works best in particular circumstances. By example, cancer patients not only want to know survival rates, but the impact of different therapies on their quality of life or ability to work.
PCORI uses Patient-Centered Outcomes Research to addresses the questions and concerns most relevant to patients. The Institute involves patients, caregivers, clinicians, and other health care stakeholders, along with researchers, throughout the process.
The topics are not limited to medical or surgical therapy and may include complementary medicine and self-care. The Institute also invites studies that, while comparing at least two treatment approaches, investigate variation in outcomes, with attention to demographic, biological, clinical, social, economic, geographic, and other factors.
Hospital leaders in Pennsylvania, including Geisinger Health System and the University of Pittsburgh Medical Center, have been influenced by PCORI work.
In recent months I have accessed PCORI webinars. The sessions were very informative, insightful, and reassuring that this new approach to health research is making an impact.
During the 2015 PCORI Annual Meeting, participants all agreed that the patient is the heart of the health process, and when involved in research, the patient prioritizes solutions over funding. Patients suggest that doctors focus on human contact, not electronic records, during direct meetings and minimize professional language for meaningful communication from the patient’s perspective.
HAP’s commissioned studies and initiatives also describe patient preferences for treatment as a person, not a number.
Patient participation in outcomes is paramount. HAP’s strategy to connect hospitals and consumers for good health, AARP’s recommended policies to respect the patient’s wishes, and PCORI’s investigations and support appear to be advancing together in the right direction.