This is a busy time for us here at PCORI. In the month or so since I joined the PCORI team as Interim Executive Director, I’ve had the great pleasure of learning more about the amazing portfolio of science supported by PCORI and of meeting many staff members and stakeholders to discuss our work. One of the things that has impressed me the most is the shared commitment to PCORI’s mission and the shared conviction that PCORI is having a transformative impact on the research enterprise.
A focus on the patient has been a core value at PCORI since its earliest days. After all, it’s in PCORI’s name. So, it is top of the mind in all we do here. It is a large part of why I am so pleased to be a part of PCORI at this critical point in its history. In my experience as a physician and clinical researcher, I have seen firsthand that taking the questions that matter to patients as the starting point and bringing patients into the clinical research process as partners—these changes have dramatic benefits for clinical research. (And in fact, patient-centeredness is also changing the practice of medicine.)
Patients and caregivers have lived experience that can help make research more relevant and useful, and diverse backgrounds, professions, interests, and talents that researchers should value.
The first thing that is apparent when you bring patients into the discussion of a possible clinical research study is that they inject a sense of urgency. It is easy for researchers (and even research funders!) to become a bit complacent. As scientists we sometimes go on too confidently about the great progress being made, but often patients are not so easily impressed. When someone coping with cancer or a parent caring for a sick child joins the discussion, the rules of the game change. Patients bring a sense of urgency into research discussions that is beneficial for all involved.
Patient-centeredness also sometimes changes the research questions. Surrogate markers generally don’t impress our patients. People living with a health condition often ask whether a treatment can reduce the burden of disease on themselves, their caregivers, and families. Cure, longer survival, and other traditional clinical outcomes are important, but sometimes not the patient’s primary focus. We won’t know that unless patients are at the table.
The first thing that is apparent when you bring patients into the discussion of a possible clinical research study is that they inject a sense of urgency.
Finally, meaningful patient input can help researchers develop a better strategy for implementation. Patients aren’t just people with an illness. Often patients bring creative thinking and useful ideas. Sometimes patients help researchers improve study design and conduct. Patients and caregivers have lived experience that can help make research more relevant and useful, and diverse backgrounds, professions, interests, and talents that researchers should value.
In less than a decade, PCORI has had a dramatic and transformational effect on health research in this country. We have truly led the way in emphasizing that true patient-centeredness and a focus on outcomes that matter most to patients are elemental to making research more relevant and useful to healthcare decision makers. This will remain our focus while I serve as Interim Executive Director, and I know my successor will build on that central commitment as PCORI looks to continue its work in the upcoming year.