According to a recent Wall Street Journal article, we should be.
A national survey of 900 patients and 100 family caregivers commissioned by the Patient-Centered Outcomes Research Institute (PCORI) revealed 83% of individuals managing a chronic or rare disease and 81% of people caring for an individual in a chronic condition want to be involved in health research.
And, when asked about the results by WSJ, Marc Boutin, National Health Council (NHC) Executive Vice President and Chief Operating Officer, said this shouldn’t come as a surprise.
“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.”
Yet, though it seems so obvious to include patients and their family members in the process, traditionally it’s a step that has been left out or simply overlooked.
The benefits, however, could be substantial. In addition to getting patients more involved generally, it could also help in the progression of Shared Decision Making.
For example, the survey found 72% of patients and caregivers believe research on medical treatment choices can help patients make better treatment decisions.
Additionally, it found patients and caregivers most largely wish to participate because they hope to help other patients manage their medical conditions.
In fact, 66% of patients and 58% of caregivers said they would be interested in working with researchers if possible in the future. The largest barrier to that effort however is simply having the time to do so.
So, as an industry, we should be moving forward and thinking more broadly about patient involvement and the overarching benefits.
Not just when they enter the inpatient environment, but in preventive care in the true sense of the term.
In the research that constantly changes the state of healthcare as we know it.
As Boutin states:
“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.”
Find out more about the PCORI survey here.