To best achieve our goal of supporting comparative clinical effectiveness research (CER) that helps patients and those who care for them make better-informed healthcare decisions, we obtain input from various end users of CER research. We are interested in the opinions and experiences of patients, family caregivers, clinicians, researchers, payers and purchasers of health care, and those working in the pharmaceutical and medical device industry. We want to know what they think about the type of research we fund—patient-centered CER—and the value of engaging patients and others from the broad healthcare community in that work. This information is critical for us to determine how we can best refine our research portfolio to be most useful to those we serve and how we can communicate research results most effectively.
We were pleased to update the PCORI Board of Governors and the public today on one of the ways we solicit that information—surveys of patients, caregivers, and clinicians. A key finding from the surveys was that patients, caregivers, and clinicians were generally not familiar with the term comparative effectiveness research (CER), but once they saw its definition, they were enthusiastic about CER’s potential to help them make decisions about healthcare options. The same applies to attitudes about engagement in research: the people surveyed weren’t familiar with the concept but were enthusiastic about its potential to improve the value of research once they saw what it means.
How we conducted the surveys
From September 2014 through January 2015, we asked patients, caregivers, and clinicians about CER and the value of engaging with patients and other stakeholders as research partners. These surveys provide a snapshot, allowing us to understand current views and begin to track how knowledge and attitudes about CER and engagement in research change over time. The results are also immediately useful in helping PCORI identify the best ways to communicate CER information to those who need it.
The patients and caregivers who completed the survey had, or cared for someone with, either a chronic health condition or rare disease. The clinicians included primary and specialty physicians, physician assistants, and nurse practitioners.
In the surveys, the patients, caregivers, and clinicians were asked different questions, in addition to those about CER and engagement of patients and other partners. We asked patients about why they seek health information, and we asked clinicians their opinions about the availability of adequate research evidence to inform their clinical decisions.
Several stakeholder groups have guided development and analysis of these surveys. We established an advisory group consisting of representatives of patient advocacy organizations, medical societies, and researchers who have had experience with patient engagement or comparative effectiveness research. We also relied on working groups, each representing one of the stakeholder categories surveyed.
What we learned
We learned from these surveys that patients, caregivers, and clinicians are enthusiastic about the potential of patient-guided CER. More than 90 percent of the patients, clinicians, and caregivers for patients with rare conditions—and more than 80 percent of caregivers for patients with chronic conditions—reported that they believe CER is useful for making treatment decisions.
A strong majority of all four groups agreed that partnerships between researchers and patients and others in the healthcare community would increase the value of research. When asked whether they would participate in such research, a majority of each group expressed interest.
Among both the patients and caregivers, the factors most commonly endorsed as very important in determining whether they would partner with a research team were:
- Believing that their participation can result in meaningful findings
- Feeling respected by the researchers
- Having an interest in the research
Among the clinicians, the following factors were most important:
- Helping their patients receive better care
- Contributing to scientific knowledge
- Making research studies more meaningful to patients
Through presentations, webinars, and publications, we plan to inform our stakeholders of our findings. We will also use the information to tailor PCORI’s activities in support of patient, caregiver, and clinician partnerships in research and in facilitating the use of patient-centered CER findings in health decision making.
This summer, we plan to learn more about how representatives of payers, purchasers, and industry view patient-centered CER. See our website for more information on how are we evaluating stakeholder views.