To mark our fourth anniversary, we invited representatives of our key stakeholder communities to describe the influence that PCORI has had on their work and their perspectives on clinical research. In this post, a physician, academic, and researcher talks about how PCORI introduced her to patient-centered outcomes research and inspired the creation of a new training center. The views expressed are those of the author and not necessarily those of PCORI.
My interactions with PCORI have completely changed my approach to research. In fact, they inspired me to establish a center for patient-centered comparative clinical effectiveness research (CER) at the University of Arkansas for Medical Sciences (UAMS) and Arkansas Children’s Hospital Research Institute. At that Center for Pediatric Comparative Effectiveness Research, which opened July 1, we will recruit, support, and mentor young faculty interested in patient-centered CER.
New Concept: Patient-Centeredness
I learned about PCORI when it was first being created. I was Dean of the UAMS College of Medicine and following the development of the 2010 Patient Protection and Affordable Care Act. My first direct contact with PCORI was its Engagement Workshop in Memphis, Tennessee, in August 2013. That workshop, The Power of Partnership in Research: Improving Healthcare Outcomes in Underserved Communities, was a really helpful introduction to PCORI’s mission and the sort of work it is looking to fund. While I had previously been familiar with outcomes research, the concepts of patient-centered research questions and research approaches were new to me.
Most of us who have been engaged in scientific investigations have conceived our research questions in collaboration with colleagues and have not sought input from patients. I learned that when you do include patients, you get a new perspective. It’s a very different way of doing things and takes some learning. When I mentor other investigators, they often think at first that PCORI can’t possibly mean that patients and other stakeholders must be intrinsically involved throughout the research process. “That’s impossible,” they say. But I have to assure them, it can be done, and it does improve the research.
For example, a young researcher I was advising had come up with a variety of ideas for a research project on autism. He then put together a group of about 40 parents and others interested in the problem. They suggested research questions that they thought he should address and outcomes that were most important to them. They reached a unanimous conclusion on the interventions that he should test. After talking with this group, the investigator made major changes to his plans.
Encouraging Patient-Centered Research
As a capstone to my career, which included 11 years as Chair of the UAMS Department of Pediatric before becoming dean, I wanted to help others in pediatrics see the importance of engaging in clinical research. When I discovered PCORI’s approach to funding patient-centered CER, I used that as a catalyst to convince the medical school to invest in a training center. The center is focused on preparing pediatric clinicians and other faculty who are relatively new to research to conduct or become co-investigators in patient-centered CER. One of our goals is to win PCORI funding.
Because many of the PCORI projects are just out of the gate, it’s too soon to see the long-term impact of institute. My guess is that—if communication and dissemination components work as envisioned—PCORI really will change the practice of medicine. I see this spilling over into everything, including other research, other funding agencies, and even patient care. Clinicians will become less authoritarian in their approach and more understanding of the need for patients to be involved in their own care, and frankly they will begin to realize patient involvement can actually improve outcomes.
Fiser is a professor in the Departments of Pediatrics, Anesthesiology, and Psychiatry at the University of Arkansas for Medical Sciences and previously served as Dean of the College of Medicine