National Survey Shows Patients Want to be Involved in Health Research

Jul 11, 2013, 10:42 ET from National Health Council

National Health Council Calls for Greater Patient Engagement

WASHINGTON, July 11, 2013 /PRNewswire-USNewswire/ -- An overwhelming majority of people with chronic and rare diseases (83%) and family caregivers (81%) who took part in a national survey agree that engaging patients in research can improve the value of health research. Understandably, the survey participants also value research that measures things that patients care about, such as daily functioning (87% of patients and 89% of family caregivers). The survey was commissioned by the Patient-Centered Outcomes Research Institute (PCORI) and was answered by 900 patients and 100 family caregivers.

"People with chronic conditions use our health care system more than any other segment of the population. It stands to reason that their needs must be considered throughout the research process – from the concept phase to the dissemination of results," said National Health Council (NHC) Executive Vice President and Chief Operating Officer Marc Boutin.

"The patient voice has been left out of the research continuum for too long. It is heartening to see the patient, provider, and research communities coming together under PCORI to create a meaningful engagement process. The resulting research will be more in-line with the needs of people with chronic conditions. And when the research findings are integrated with the life flow issues of patients – their ability to hold a job, have a relationship, raise a family – and the work flow issues faced by clinicians, there's a greater chance we will have practical, usable information to improve health outcomes and help patients live longer and better lives."

Boutin was part of a webinar panel that reviewed the survey results. He also sits on the PCORI Advisory Panel on Patient Engagement.

Other Survey Findings:

  • 72% of patients and 72% of family caregivers concur that research on medical treatment choices can help patients make better treatment decisions.
  • 66% of patients and 58% of family caregivers would be interested in working directly with researchers in the future.
  • The most important reason for patients to participate in research is to help others with their medical condition. The greatest barrier to patient participation is lack of time.
  • When asked which sources of health information they trust, patients rated physicians the highest, followed by disease-focused organizations.


The National Health Council is the only organization of its kind that brings together all segments of the health community to provide a united voice for the more than 133 million people living with chronic diseases and disabilities and their family caregivers.

SOURCE National Health Council