Prior to his PCORI appointment last spring, Selby directed research for Kaiser Permanente, a California-based health insurer. We spoke Thursday afternoon about how PCORI’s priorities were set, what to expect in coming months and how the group’s work could impact what insurance companies cover. What follows is a transcript of our conversation, edited for clarity and length:
Sarah Kliff: I was hoping you could start off by explaining, in your own words, what it is that PCORI does.
Joe Selby: Our mission is to provide useful information that is helpful to patients and their caregivers and clinicians in making medical care decisions. The key things we focus on are questions that patients and clinicians think are important. We want to involve them in the process of doing research and then disseminate information from that research. The novel part of what we were doing is taking substantial guidance from patients.
SK: The national agenda that PCORI released last week had five broad research focuses, including “comparisons of prevention, diagnosis, and treatment options.” That surprised some observers who had expected more of a laundry list of conditions you would focus on. Why not get more specific in your agenda?
JS: There are two big reasons. First, we thought it was the wrong direction to take at the very beginning, to specify certain conditions. We didn’t want to close ourselves off to certain patient groups on Day 1. In fact, we plan to always hold some of our funding open for any condition or any treatment. Second, this is not a simple process to set the right, specific agenda. We could have gotten one done, but I don’t know it would have been the right one.
SK: So the idea, in the future, is that you will have a specific list of conditions that you focus on?
JS: Without a doubt, but we wanted to start broadly, having a broad agenda.
SK: I thought it was interesting that another one of PCORI’s main focuses will be communicating about comparative effectiveness research. What work needs to be done there, in terms of getting your findings to patients?
JS: I think the big fear is that we do all this great research, and it simply doesn’t get picked up. Sometimes it’s because the information simply can’t be found in an accessible format, so we need to work on ways to get information into electronic health records or other venues so that physicians and patients can access it. Web-based information is something we might want to work with, to develop a trusted Web site that patients and clinicians could use.
SK: How do you see the work that PCORI funds, on what treatments are most effective, will interact with what treatments health insurance companies cover?
JS: Right, now coverage decisions are being made in the absence of evidence. One should be comforted to know that if we’ve generated better research, that the coverage decisions can take that into account. If we’re busy conducting research on what works best for this patient at this time, over time the amount of information will increase.
It’s a big concern, frankly, that comparative effectiveness research will be used to make blunt decisions based on average. I think over the last four or five years, the scientific community and now PCORI have come to appreciate it is important to understand this question of what works best for whom. The answer is to find ways to look for, identify, verify real genuine treatment differences between patients.
SK: When you look out about five or so years from now, how do you see PCORI affecting the patient experience?
JS: One way or the other, patients will feel they know where to go to get useful information when they have a medical decision to make. I hope and think there will be generally a greater trust that the research findings coming out are believable and useful.
SK: Do you think that’s a place where patients are headed? I think back to the recent changes to guidelines for PSA Tests and breast cancer screenings, and those were met with a lot of anger and distrust.
JS: Those two events were not the results of a new piece of research, as much as they were results of a body of people thinking about the research that had been done and trying to reach policy conclusions based on that. While a lot of people spent a lot of time focused on that information, my sense is that the way the findings were communicated was not highly useful.
That raised the question of whether, and to what extent, the message had been vetted with patients and clinicians. There were some deficits in the communication of both of these, maybe in some of the assumptions about the way that information gets to patients.