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Culture Change: Patient-Centered Outcomes at the Center for New $600-Million/Yr Research Institute PDF Print E-mail
Written by John Weeks   

Culture Change: Patient-Centered Outcomes at the Center of New $600-Million/Year Quasi-Governmental Research Institute (PCORI)

Summary: Consider the irony in establishing a research institute to prioritize patient-centered interests and outcomes. Shouldn't this be the focus of all healthcare research? The Board of Governors of the new quasi-governmental Patient Centered Outcomes Research Institute (PCORI) are taking the patient-centered charge seriously. They view themselves as leaders of a significant culture change in research. The 4 questions they urge researchers to answer will resonate with those whose practices, and outcomes, are whole-person and integrative. In a recent Seattle meeting, the Board strategized about how to meet its considerable challenges. Not the least of which is the strangling of innovation by the pharma mind that dominates research. Among those presenting in Seattle was a panel on complementary and alternative medicine. CAM is a mandated PCORI interest. Daniel Cherkin calls the work a sign of "real hope" for US medicine. Carlo Calabrese calls PCORI "the most important work in health care research today." Here is a look at PCORI's recent Board of Governors meeting and a few of the directions urged by the CAM panel. 
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Patient-Centered OutcomesResearch Institute
Why do we need to have a research institute dedicated to being patient-centered? Shouldn't all medical research be patient-centered?

One of the Governors of the powerful new Patient Centered Outcomes Research Institute (PCORI) tossed these comments out during a break in a PCORI Board of Governors meeting and "listening session" in Seattle on September 19, 2011.

The questions, half in jest, succinctly comment on how far the U.S.' $30-billion research apparatus upholding the awful population-wide outcomes of the US healthcare system has strayed from a patient-focused mission. How is it that the pay-dirt of outcomes patients identify as important is not even on the horizon of so much research?

Observers of the initial activity of PCORI
witness an agency taking its transformational task seriously. PCORI is a quasi-independent, non-governmental agency created via the Obama Affordable Care Act. By 2014, PCORI is expected to dispense over $600-million a year in outcomes research with a re-framed focus. This amount far over-shadows what the National Institutes of Health presently parses out for real-world research.

Step 1 for PCORI: Realize no definition of
"patient centered outcomes research" existed to guide their priority setting and grant-making. The concept wasn't on the NIH's radar. The Governors created a Methodology Committee and it went to work. Below is the draft definition of Patient Centered Outcome Research, made public in July, together with the 4 associated questions to conceptually guide researchers. Those who view their practices, and outcomes, as patient-centered will likely be intrigued.

PCORI's Draft Definition of "Patient-Centered Outcomes Research"
"Patient-Centered Outcomes Research (PCOR) helps people make informed health care decisions and allows their voice to be heard in assessing the value of health care options. This research answers patient-focused questions:
1. "Given my personal characteristics, conditions and preferences, what should I expect will happen to me?"
2. "What are my options and what are the benefits and harms of those options?"
3. "What can I do to improve the outcomes that are most important to me?"
4. "How can the health care system improve my chances of achieving the outcomes I prefer?"


In their rationale for the definition, PCORI's Governors steadily train their eyes on the prize. The next step in shaping the PCOR definition is to take the draft, which has already had a public comment period, to a series of patient focus groups. In addition, the PCORI board is contracting with an outside entity to access best practices, in any industry, for bringing consumers into major decision processes. Patient input will help set priorities and develop research questions. 

Confronting the restrictive biases of reviewers

Epstein: Need to retrain the reviewers
Challenges to significant culture change were never far from the discussion. Since PCORI wants "to transform the way research changes lives," how are they to establish this new research platform?

A significant discussion emerged on managing the evaluation of research proposals.
"How are we going to get this (patient-centeredness) into the review process?" asked Arnold Epstein, MD, the John H. Foster Professor and Chair of the Department of Health Policy and Management at Harvard University School of Public Health in Boston. "We'll have some 600 reviewers. How do we get them to see how we apply patient-centered outcomes?"

  "If we create a standard for all of our
research and it becomes the standard for
others, we can change the culture."

Eugene Washington, MD, MSc

The governors explored how they might ensure that exceptional, innovative, patient-centered projects are not shot down by researchers rutted by reductive models.

One governor suggested a training for reviewers. Another offered creating a kind of crib sheet check list to keep reviewers focused on the new ideas. PCORI chair Eugene Washington, MD, MSc, the dean of the David Geffen School of Medicine at UCLA,
capped the dialogue: "We need to create a patient-centered outcomes research filter, a PCOR lens, to make sure (the work of the reviewers) aligns" with PCORI's new approach.

The theme did not go away. The mindsets of reviewers and of typical researchers are clearly an obstacle to fulfillment of PCORI's mission. How can innovative ideas gain acceptance? Another suggestion: Specialized workshops to train existing health services researchers. Maybe also workshops to train those "who are not previously researchers, for more of a blank slate," Epstein added.

Washington, again, summed up: "If we create a standard for all of our research and it becomes the standard for others, we can change the culture."

Perspective of two CAM health services researchers

Dan Cherkin, PhD
, a leading health services researcher in complementary and integrative medicine, attended the first day of the meeting. Cherkin, with
the Group Health Research Institute, is on the National Advisory Council for Complementary and Alternative Medicine (NACCAM). In a note to colleagues and to PCORI board member Leah Hole-Curry, JD the next day Cherkin wrote (and subsequently approved for sharing):
"As I was watching the proceedings yesterday afternoon, I was repeatedly struck by the intelligence, thoughtfulness, respectfulness, sensitivity, collaborative spirit, dedication, and engagement of the Board members in their work. You have all agreed to take on a monumental task with no blueprints for building the remarkable organization you are in the process of creating. Although the surreal circumstances of the health care reform legislation that gave birth to PCORI were inauspicious, with excellent leadership and impressive Board members, you are creating something quite remarkable that has the potential to have an enormous impact on diminishing patient suffering. Your work gives me real hope that, despite all the forces working against improving health care in our country, real progress is on the horizon."
"(PCORI's) work gives me real hope that,
despite all the forces working against improving
health care in our country, real progress
is on the horizon."

Dan Cherkin, PhD

Cherkin was part of a 5-person group of clinicians and researchers who presented in an evening panel  for the PCORI board on CAM research in the Pacific Northwest.

Patient-centered outcomes research is not synonymous with CER

Notably, PCORI decided early to drive a wedge between it and "comparative effectiveness research" (CER). The "Guiding Principles" in their definition process included this important distinction:
"The group felt that from a patient's perspective, adopting a definition of PCOR that was synonymous with CER would not sufficiently describe the aspiration of this form of investigation. PCOR aspires to give voice to the patient while helping patients improve their experience and decision making in the healthcare system. Not all research that might be expected to help a patient make decisions or improve their experience in the healthcare system is explicitly comparative, and comparative evaluations do not necessarily incorporate the patient's voice, outcomes that matter to patients or comparisons that they value."
The Board of Governors is on a tight time-frame. The group is staging a series of white papers, investigations and fact-finding processes for a May 2012 major report from the PCORI Methodology Committee. Those interested can go to PCORI's Public Input page and can sign up for the list-serve.

Carlo Calabrese, ND, MPH, executive director of the Naturopathic Physicians Research Institute, also attended the meeting and participated in the CAM panel. The former NACCAM member is a leader in his profession's push for outcomes research and particularly that which looks at the experience that the patient has when encountering providers who take a whole person, health-oriented approach:
This is hands down the most important work going on in US healthcare research today. Right here. In this room.” 

Notes on the CAM Presentation in the PCORI Board "Listening Session"

Mootz: Organized CAM group
Through Calabrese and Michelle Simon, PhD, ND, a member of the Washington Technology Assessment Program Clinical Committee, I was invited to participate with Cherkin in the 5 person panel. Washington State Department of Labor and Industries associate medical director Robert Mootz, DC
rounded out the group. Mootz was the principal organizer of the panel. The group was aware that the September 19, 2011 panel was probably the one focused listening the Governors would have on complementary and alternative medicine (CAM) as they toured other regions. Here are key points:

  • Simon and Calabrese in particular stress the mind-body-spirit, whole person, health-focused nature of the CAM practices. They introduced the concept of anticipated positive side-effects from whole person approaches through both description of practice and through examples of whole person research.
  • Positive indirect outcomes from whole person care that have been found and reported as "unanticipated" are actually expected by health-focused integrative practitioners working with patients who have chronic conditions.
  • The CAM movement is/was patient-centered. Urged them to consider the expertise in the movement relative to individualized, patient-centered approaches.
  • Cherkin and Mootz each underscored how good health services research projects have shown effectiveness for CAM for significant chronic conditions. They argued that more patient-centered research on CAM use for other conditions is warranted.
  • Most urged the Governors to take the the lead of the patient and examine the value of the whole practice, of the discipline, instead of looking at pieces of CAM.
  • We pointed out that, at this point in time, if CAM/integrative practices are not explicitly and directly included in documents, in committees and at the table, that the rich CAM perspectives and depth experiences in patient-centered, comparative environments are likely to be forgotten.
  • I urged the Governors to take seriously the potential leadership from CAM and patient-centered integrative practitioners by appointing CAM researchers to committees and task forces and hiring or retaining one to continually offer a CAM/integrative perspective.

Simon: Clinician described positive side-effects of wholeperson practices
The next day, Mootz passed the following note on to the CAM presenter team. He approved it for sharing:
" ... feedback received so far was that it was useful. The chair especially appreciated our organization and plowing through all the information while only going 12 minutes over. Several observers who were there mentioned to me this morning that they were quite impressed with the degree of CAM accomplishments and how well our presentation truly aligned with what PCORI is supposed to be all about. Patient-centeredness and how the whole context of intervention needs to stay on the radar screen. That 50% of NCCAM funding [to cam schools] went to PNW institutions stuck, as well as the degree of explicit integration (any willing provider, collaborative research, etc)."
If anyone would like to see the group's presentation slides, please send me a note. Again, to track PCORI developments, go to PCORI's Public Input page to sign up for the list-serve

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