Keeneland Q&A: Joe Selby
A constant theme of this year’s Keeneland Conference is the emergence of the discipline of public health systems and services research (PHSSR) from strict research and evaluation to results that are beginning to be used by public health departments and agencies. So who better a dinner speaker than Joe Selby, MD, MPH, head of the Patient-Centered Outcomes Research Institute (PCORI), authorized by Congress under the Affordable Care Act. PCORI’s role is to conduct research and provide information about the best available evidence to help patients and health care providers make more informed decisions. The Institute's goals include:
- Substantially increase the quantity, quality, and timeliness of useful, trustworthy information available to support health decisions.
- Speed the implementation of patient-centered knowledge into practice.
- Influence clinical and health care research funded by others to be more patient-centered.
NewPublicHealth spoke with Dr. Selby about PCORI’s work so far and the critical goal of disseminating scientific research to improve health.
NewPublicHealth: Tell us about your talk at the Keeneland Conference.
Dr. Selby: I’ll start by talking about the historical trends that led to PCORI’s formation. I think that these trends are bringing what we do, which is called comparative clinical effectiveness research, together with quality improvement and with public health systems and services research. There is a convergence of interests between what the conference attendees do as public health practitioners and public health researchers and systems-based researchers and what the quality improvement world is doing and what we’re trying to do at PCORI. There are many common bonds and a new appreciation for that.
It has suddenly dawned on everyone that you’ve got to put your patients or, in the case of public health, your communities, at the center of the research activity. And I know that in the public health world, they are involving communities and patients within communities and clients and consumers in their planning and intervention activities. That is one of the bonds that ties us together and that leads to enhanced productivity whether we’re doing clinical research like PCORI does, whether we’re doing quality improvement, or whether we’re doing public health.
The second important link is this growing recognition that one size does not fit all, whether we’re talking treatments with drugs or surgery or whether we’re talking public health interventions. There is a growing awareness that you have to look at how things work, how public health programs, for example, work in population sub-groups just like we look at that at PCORI—at whether individual treatments work differently in different patients and populations. That is built into our legislation: the basic notion is finding out what works for whom and it’s a lesson that needs to be kept in mind in public health practice just as it does in clinical research.
And a third common bond is the importance of capturing clinical data for guiding the research or public health enterprise. There’s a growing realization that there is very rich data, electronic data already stored, and we need to capture that both for the kind of clinical research we most often do and for public health. So, our bonds are—putting patients at the center, remembering to look at effectiveness in population sub-groups, and the importance of having and collecting and analyzing big data populations to guide us.
NPH: Where is PCORI right now in terms of its mission of disseminating outcomes and recommendations?
Dr. Selby: We’ve done all the preliminary work, and we’ll be rolling out both a very large research agenda and a set of announcements in 2013. We’re also continuing to develop our ability to engage with patients and other stakeholders. So, the preliminary work that we’ve done is we’ve laid out our research agenda. We’ve laid out the methodology report. We’ve gotten public comments on both. We have revised them. We have adopted them and posted them, and we’re living by them. That had to be done by statute before we could start funding research. In May last year we had our first announcements, and that culminated in our first awards in December, and this year, we aim to commit a total of about $355 million. That’s dramatic, and that’s what we’re doing.
Our appreciation of our mission continues to evolve and is become more exciting as we begin to see the potential of research that’s really informed by the close engagement of the researchers getting the funding. We know we can make a difference, that that can make the research more relevant and can enable the research to change practice more quickly, and that excites us.
NPH: How much education do you think that consumers and health professionals need to best understand the value of what PCORI is doing?
Dr. Selby: Even today without any further education, everyone has the capacity to tell us what matters to them in their own health care and in the decisions they face. You don’t need education to say that this is a problem that I faced and I needed help making the decision. You don’t need education to say this is more important to me than that. So I think patients, as well as clinicians and others, are prepared to engage with researchers on that level, just as they’re prepared to engage with their clinicians in making care more patient centered. And, clinicians who are non-researchers are capable of working with researchers to help them understand what matters.
But, having said that, everyone, patients, clinicians, and researchers could all use more training in, number one, how to work together and how to jointly identify the key questions and then how to address them. So, this ability to work together for patients to understand what researchers are saying, for researchers to learn how to listen to patients and for clinicians the same thing—they all need to understand how to communicate better. That’s the type of education that’s needed in training. The second is training in how research works, how it takes place, how it’s thought up and implemented. For that, I think, patients and other non-researcher stakeholders need education and we are planning a good deal of training in that area, in preparing patients and clinicians and other stakeholders to work as part of research teams. Part of our allocation in 2013 will support training and new partnerships among patients, clinicians, and researchers. And, finally, everybody could use more training in how to interpret and present data—even researchers are not very good at that oftentimes. They are not really good at presenting the data in useful ways that people can take a look at and then know what they want to do.
NPH: How will you be disseminating PCORI’s work?
Dr. Selby: Dissemination is difficult and it takes a multi-channeled approach. Different audiences have different signals that they listen to, so the web and web-based information may influence some people. Written literature may influence other people. Lay publications, professional publications, scientific journals—all of that’s important. Then there is social media, and apps that doctors or patients can use and those are promising areas. But, we think that probably the most important dissemination strategy is that the research we’re going to fund actually answers questions that the end users are asking for. So, we’d like to have the patient advocacy organizations and large patient communities and the clinicians, particularly the specialty communities, with us on day one saying this is a question we need answered, and on day two, as members of the research team. Then when we come to look at the findings from the study, if we jointly decide that these deserve dissemination, that these are important findings, they’ve got to get out, they’ll change practice if they do, then we’ve got these people at the table, the very people that we would like to help us disseminate the findings are there. The ace up the sleeve, if you will, is that we’re partnering with patients and stakeholders at the beginning of the study, not when the results come out.
NPH: How can PHSSR help inform PCORI’s work?
Dr. Selby: Researchers engaged in PHSSR see a lot of important questions, and many of those can be cast in a comparative effectiveness framework. So, I hope PHSSR folks will send us questions when they see them. I hope that they will participate on our review panels and our advisory panels, and I hope that they will apply for our funding because there is a lot of overlap between what we’re interested in funding and what they’re interested in seeing happen.