(Photo: U.S. Navy)

PCORI is not exactly a household name, but if Dr. Anne Beal has her way, it will be soon. The acronym stands for Patient Centered Outcomes Research Institute—a group of doctors, researchers, statisticians and patient advocates who will commission evidence-based research for the health care system.

The key here is “patient-centered.” Beal says the goal is to provide easy-to-understand information to patients so they can make the most informed health care decisions.

PCORI is yet another part of health care reform that people may not know much about. But while it was created via the Affordable Care Act, but it is an independent, non-profit organization.Beal, the No. 2 at the new institute comes to PCORI after leading the Aetna Foundation, the philanthropic arm of Aetna Inc. There, she emphasized three areas: preventing obesity, racial and ethnic health care equity, and integrated care. Beal says she’ll carry that experience into her new role: “Health equity is going to be one of the priority areas within [PCORI’s] research agenda.”

In December, hundreds of project proposals flooded the PCORI office vying for funds. By March, PCORI staff will have picked about 40 projects to fund with $26 million in grants over two years. Those will help set the tone for PCORI’s standards of research.

KHN’s Shefali S. Kulkarni spoke with Beal about this the new agency. Here are edited excerpts:

Q: Can you give an example of how you envision people using the kind of research that PCORI will fund?

A: Let’s say someone is trying to decide if they should have Procedure A versus Procedure B. You give them all this information, but what the patient is saying is, “Well, what’s really important for me is that I’m very afraid of pain. What procedure is going to be the lowest pain option that still gives me the benefits that I need?” Somebody else is going to be very interested in what will give them the longest life. Somebody else may say, “Well, what’s really important to me is whatever procedures I have, I am a working parent and I can’t really afford a lot of time off from work, so what procedure is really going to take care of this condition, but get me back to work as quickly as I can?”

So, then we [at PCORI] are trying to think of the different options that are available to us, not only looking at research that says, “If you do this cardiac procedure versus this cardiac procedure, here’s what the outcome is.” But now: here’s what the outcome is in terms of pain, here’s what the outcome is in terms of days off from work, here’s what the outcome is in terms of longevity. So then you, as the patient, have the information to make that comparison and make really a tailored decision that meets your needs.

Q: Where does PCORI fit into the health care law?

A: What PCORI is trying to do is address where some people said health reform fell short — so you have access, but access to what? Now that we [will] have, as a result of the Affordable Care Act, near universal access to health care, we need to really turn our attention to make sure the health care system is really meeting the needs of every patient. And in some ways that is a very grand view, but I think it’s quite necessary to really take this sort of vision of what health care should be, but then make it mean something to the average patient.

Q: Can you give an example of that?

A: Well, from a personal perspective, in the last few years my father’s been sick. So I come to Washington, I have these conversations…and we have these sort of very grand ideas of what health care should be. Then I go home and I’m at my father’s bedside, and I see the reality of what health care is. Because of all this, I think the patient experience is often fragmented and not well coordinated. There is a lot of ambiguity in health care, both on the part of providers and patients, therefore patients don’t necessarily know what the best choices available to them are. When really thinking about a patient-centered research enterprise, we have to think about if we present information that is a trusted source that people can go to and that really addresses their needs and concerns.  [It should be] information and knowledge that was created from the patients’ perspective. For me, the promise of PCORI is really taking these highfalutin conversations and making them real, so that at the end of the day — you know next Thanksgiving, when I’m telling my family I work for PCORI — they know what that means.

Q: What will the organizational structure of PCORI be?

A: We take it very seriously when we say that the patient has to be engaged at every step of the process. So, for example, we have patient representation on our board — every grant review that we are going to have is going to have at least three patient representatives to make sure that not only is [the proposal] an interesting question, but is it a meaningful question to the patient? Even as we’re defining patient-centered outcomes research, we are engaging focus groups all around the country. Even as we are developing our research agenda, we’re looking for patient input. I think that is something that is really going to become part of our DNA, and we’re already seeing it manifest right now.

Q: Health disparities, obesity and health care delivery systems were your main focus at your last job as the president of the Aetna Foundation. How is PCORI going to address these issues?

A: A lot of what drives health disparities is in fact differences in health systems’ function. I think one of the most exciting promises of PCORI is that included in our thinking about comparative effectiveness is that we want to compare systems of care. So being able to look at the role of the health system in achieving high quality care is important, as well as being able to do it in underserved settings, or large minority-serving settings. It really is going to be about thinking, in this whole continuum, of what are the questions, how do we execute the research and then, specifically, who the population is it that we try to go for. These are some of our preliminary thoughts, but in our research agenda, we have different priority areas and health equities are certainly one of them. We are really diving deep into them now.

Q: Where do you see PCORI in the next 10 years?

A: It’s actually pretty simple: we are funded through 2019 and what I would like to see for PCORI is that our contribution to improving patient care and the patient experience is so significant that patients will say, “It can’t go away.” What I really envision is that PCORI becomes a go-to place for patients and, frankly, even for their providers. We are willing to be really innovative and we’re willing to be very open. So, whether it’s creating new apps, or thinking about a webpage or a YouTube channel, nothing is off the table. Obviously, doing our work and publishing it in the New England Journal of Medicine is not the way to get to patients, so we are going to have to think very creatively about how [to] make [our] work relevant for patients.

(Ryan Wilcox: Flickr)

Not so long ago, it was common for doctors to keep sick patients, even terminally ill patients, in the dark about their prognosis. Today, many patients are actively involved in managing their illnesses, in partnership with their doctors. Indeed, one of the tabs on this blog is “You’re the Boss.”

But a “Perspective” in today’s New England Journal of Medicine says doctors have shied away from explicit conversations about prognosis with a group of patients they should engage–the very elderly. The writers recommend doctors discuss “overall prognosis” with elderly patients who have a life expectancy of less than 10 years or who are 85.

If you’re thinking that conversation sounds a bit, well, unpleasant, research shows that a majority of elderly patients want to have the information. In one study, 55 percent of frail elderly patients whose doctor had never discussed their prognosis wanted to. In a second study, albeit a small one with 60 people including disabled African-American, Chinese-American, Latino and white patients, 65 percent said they would want to be told if they had less than five years to live.

The recommendations come from a team of doctors in the Division of Geriatrics at UC San Francisco and the San Francisco VA Medical Center. “People want to know not just for medical reasons,” said Dr. Alexander Smith of the San Francisco VA, one of the authors, “but because they want to make life choices, put financial affairs in order, arrange for a durable power of attorney for health care and think about longterm care.”

Smith is a palliative care physician, someone who is trained in talking with patients about challenging medical news. He acknowledged that it is a skill to have these conversations. But for many elderly patients, information about lifespan is not a surprise. “In our experience, many older adults are aware that they are in life’s final chapter, so such a conversation would not come as a shock to them. As physicians we have an obligation to give them honest information.”

Of particular concern is the risk of many medical interventions, including screening tests. The writers cite a specific example of colonoscopy, an invasive procedure where the benefits may not be seen for years, benefits the patient may not live to see.

“This is really about empowering patients,” Smith said, “giving patients information so they can make informed choices.”

Still, doctors must tread carefully. While a majority of surveyed patients did want prognostic information, a sizable minority did not. Doctors should not force the discussion, the writers say.