That is certainly the case in health care. Traditionally, it has been the sole responsibility of health researchers to develop questions for study that, when answered, can provide reliable and relevant information for patients and clinicians. For the most part, they’ve done an exceptional job, as evidenced by countless discoveries about the nature of disease and remarkable advances in diagnosing, preventing and treating them. But when researchers are the only ones determining scientific inquiry, other critical perspectives can be missed – most notably, the practical, frequent questions asked by patients, caregivers and clinicians about the best choice among two or more for options that are available.
But what if we tried something different – still soliciting the best ideas for studies from the research community but focusing on questions most important to patients, their families, clinicians and other healthcare stakeholders not traditionally involved in the research process? What if we then brought those same stakeholders, plus top scientists, into the room where proposals to study those questions are judged? What if we also sought to make them partners on the research teams that design and conduct the studies and help get the word out on results that could improve care and outcomes?
We don’t have to imagine. That is the approach of the Patient-Centered Outcomes Research Institute, or PCORI, which was established by Congress in 2010. Since then, PCORI has built a portfolio totaling more than $1 billion in research projects through this inclusive stakeholder-driven research process.
We know patients, their families, and clinicians often make choices about care options with little reliable evidence as to which one might work best based on their particular situation and concerns. So we seek to fund studies that can provide useful and reliable evidence about how well different care approaches work, for whom, and under which circumstances. By ensuring that patients and those who care for them play a central role throughout the research process—beginning with the choice of topics and questions to be studied– we believe it’s more likely the results will be useful and taken up in practice.
In our first five years as a research institute, we’ve established a strong record of convening stakeholders from across the healthcare community to pursue this goal. It’s central to the way we pursue our mandate to fund comparative clinical effectiveness research (CER) that can help patients, clinicians and other stakeholders make better-informed health decisions.
We’ve now funded hundreds of studies designed to do that for such high-burden conditions as cancer, heart disease, mental illness, and others. A growing number of the topics and questions we approve for research funding are based on guidance from multi-stakeholder groups that meet regularly to help us refine our portfolio. Examples include a comparison of different types of radiation therapy for breast cancer, assessing the best form of anesthesia for patients undergoing surgery for hip fracture, comparing antibiotics versus surgery to treat patients with uncomplicated appendicitis, and studying whether breast cancer screening tailored to women’s risks and preferences is as effective, with fewer associated harms, as annual screening. One recent gathering of patients, researchers, clinicians, insurers, industry representatives and others focused on how we can improve the diagnosis, prevention and treatment of hepatitis C virus infection and led to our Board of Governors approving $29.5 million in studies on that topic just the other day.
We plan to convene many more stakeholders in coming months to guide us on prioritizing additional potential topics for future funding. In each case, our goal is to deliver on the promise we’ve made to all members of the healthcare community from the day we were founded—to give them a seat at the table in seeking answers to the research questions most important to them.
We hope you’ll join us in this effort. At our first annual meeting, Oct. 6-8, we’ll discuss our work to date, both early study results and promising projects in process. You can tune in to selected sessions via webcast and follow the conversation about the meeting via Twitter at #PCORI2015. You also can share your ideas for research through our website. We look forward to hearing from you.
Joe V. Selby is the Executive Director Patient-Centered Outcomes Research Institute