Summary: Credit the current NCCAM administration for fostering a spirit of open dialogue and give-and-take in its National Advisory Council. Washington DC-based writer Taylor Walsh captures some of the bandying of ideas and differences of opinion exceptionally well in this report on the September 3, 2010 meeting of the NIH National Advisory Council on Complementary and Alternative Medicine. The subject could not be more important: the proposed Strategic Plan that is to guide some $650-million of NCCAM spending. Walsh focuses on the segment of the meeting in which Strategic Objective #3 ("real world research" and health-enhancing outcomes) was discussed. What will we have an opportunity to learn about the potential contributions of integrative practices? Walsh, a regular Integrator contributor, captures perspectives of advisers Steve DeKosky, Tim Birdsall, Adam Burke, Janet Kahn, Gary Curhan and Gert Bronfort, as well as those of NCCAM staff, in this well-written report on a critically important meeting.

NACCAM Members, September 2009

"Who are we?" The question was posed by Jack Killen, MD at the September 3, 2010 regular meeting of the NIH National Advisory Council on Complementary and Alternative Medicine. The advisers were considering the proposed 2011-2015 NCCAM Strategic Plan that will guide some $650-million in decision on what we will have an opportunity to learn about the potential contributions of integrative practices over the next 5 years. Killen, the agency's deputy director, laid out some answers. Then:

"Killen concluded by asking: 'Does this plan lay out a forward looking communications strategy?'  Council members did not appear to think so.

"Steve DeKosky, MD, FAC at the UVA Medical School said the statement was far too 'vanilla.'  Others called the statement 'boilerplate' that could go on the front door on any NIH center."

NCCAM Advisory Council Meeting: 9-3-2010

-  Taylor Walsh to The Integrator Blog

Taylor Walsh: DC-based integrative health reporter

The 40th meeting of the National Advisory Council for Complementary and Alternative Medicine took place Sept. 3 in Bethesda, MD.  The meeting focused primarily on the current draft of the center's Strategic Plan that was released August 30.  The morning sessions covered the plan's focus on mechanisms and translational research approaches. In the afternoon session, Director Josephine Briggs, MD invited the advisory council members to step with her into the foggy depths of the "real world."

This discussion was organized around the third objective of the strategic plan: "Increase Understanding of ‘Real-World' Patterns of Outcomes of CAM Use and integration into Health Care and Health Promotion."

The "real world" has been moving into the nation's health research enterprise in recent months, with the formulation of a national Comparative Effectiveness Research program and the emergence of such initiatives as the adoption of corporate employee behavior change programs and the growing national focus on back pain.  Last June's meeting of the Advisory Council, in fact, dealt largely with the science of behavior change.  Council members heard at that time from behavioral researchers and learned of the very sparse research on CAM interventions in that field.  Briggs described the purpose of the June discussion to get input on how and where NCCAM can play an effective role in behavior research, which is being organized formally across NIH.

Birdsall: Effectiveness is the most important area

Briggs kicked off the "real world" discussion by noting NCCAM's recent measurements of total national consumer use of and spending on CAM modalities. "We need to get to ‘How well does it work?'" she said.  "What are the strategies of effectiveness research that will inform health policy?"

She set the discussion around three questions:

• Is it clear why we should move into this area?
• What are the challenges?
• What are the other resources and experience from other fields?

NCCAM Deputy Director Jack Killen, MD said the focus on effectiveness research would be appropriate because "NCCAM is accused of not studying CAM as it is used," referring to whole-person approaches.  But beyond that: "All of NIH is struggling with effectiveness research," he said, "not just NCCAM."

Timothy Birdsall, ND, FABNO and VP of Integrative Medicine at the Cancer Treatment Centers of America responded first, saying, "This is the most important area of the NCCAM mission in my view.  It is also the hardest."

"The therapies are out there," he said. "Can NCCAM elucidate why they work?"  He suggested investment in methodologies that would support practice-based networks that would compile data that describe "What actually happens; what are the results."

Gert Bronfort, DC, PhD at Northwestern Health Sciences University suggested that NCCAM could "Define assessment algorithms to encompass everything a patient presents with."   NCCAM's role, he said, should develop "a more comprehensive strategy for evaluating individual patients."

Burke: Focus on the patient

Adam Burke, PhD, MPH, LAc at the Institute for Holistic Health Studies at San Francisco State University was more direct: "Focus on the patient, not the provider," he said.  Using the example of fibromyalgia, he pointed out that patients will see multiple providers over time, which presents the challenge of capturing data along the way.  He suggested Kaiser Permanente as a source of extensive data derived from the treatment of such conditions that could be re-analyzed with a view for identifying cost containment in such treatments.

Gary Curhan, MD, ScD at Harvard Medical School has had extensive experience with research into another real-world, health-related behavior: diet.  He noted that research on diet was once also thought to be unworkable, and suggested that whole systems projects would "not be any harder than" those focused on diet.   "We need longer, larger-scale trials, to tease out" useful data, he said.

Kahn: Invest in capacity building in CAM institutions

Briggs brought up the issue of the investigator community that will be necessary to undertake this kind of research.  Janet Kahn, PhD at the University of Vermont Medical School said, "NCCAM should invest in capacity-building in CAM educational institutions."   Researchers, she suggested, could be developed from the practitioner base that has been educated in those schools.  "A lot of building is needed," she said.

NCCAM: the Brand?

Another element of the real world that has influenced NCCAM far longer than have recent developments in CER or behavioral science is the public perception of the Center's work and agenda.   The strategic plan process undertaken in 2010 put NCCAM into the light of public comment more directly than ever, and it is clear that the staff has come out of this experience looking for guidance in formulating a message to describe the work.

Killen led the discussion by asking, "Who are we?"  He showed an illustrated chart of comments that reflected the wide and contrary breadth of reaction that NCCAM has received from many public and peer quarters. He summarized: "We're biased for; we're biased against."

He then displayed bulleted points of what is obviously a work-in-progress statement that might be used to tell the world what NCCAM stands for:

• pursue promising scientific opportunities..
• improve strategies for addressing compelling unmet needs in healthcare and promotion...
• via state of the art multi-disciplinary research...
• with rigorous objectives and impartial in interpreting and presenting an evidence base about usefulness and safety...

Killen concluded by asking: "Does this plan lay out a forward looking communications strategy?"   Council members did not appear to think so.

Steve DeKosky, MD, FAC at the UVA Medical School said the statement was far too "vanilla."  Others called the statement "boilerplate" that could go on the front door on any NIH center.

DeKosky asked if NIMH or any other NIH institute or center had to define itself in this way. The specific bullet points, he said, "also ignore the reasons we feel we have to do this" work.

Gert Bronfort asked, "Who is making these judgments (against NCCAM)?  Why take them seriously?  Just accept it and not be too influenced by it."

Adam Burke described his own approach to dealing with the hostility that CAM can attract.  "It is like the environment and global warming," he said.  "CAM is a cultural phenomenon: an argument you can't win."  His recommendation: "Make clear the accomplishments."  

Bronfort: Don't be bowed by critics

Briggs absorbed these reactions, boiling down the purpose of NCCAM's work to its simplest expression: "To help people be healthier."  Janet Kahn agreed and added that there is also the opportunity to "look anew at wellbeing."  That view, of course, extends the "real world" conversation into the vast and unexplored terra incognita of personal wellness, which the health care system and its research arms have regarded with the enthusiasm of Atlantic navigators in the centuries before Columbus. 

Understanding how CAM works as a multi-modality, whole-person-centered approach to therapy is one kind of challenge (and Briggs initiated the conversation by asking if that is even appropriate for NCCAM).  Understanding its potential to strengthen personal wellness -- if ever adopted and fully realized -- would truly distinguish the Center from its sister research organizations (and do away with that pesky identity problem.)  It is well worth noting that the authors of the strategic plan have already set out such a challenge for themselves, right there on page 2:

Briggs: We haven't focused on the health uses of CAM

"Finally, the strategic planning process forged a realization that although half of CAM use by Americans is aimed at improving general health, most CAM research to date has focused on the application of CAM practices to the treatment of various diseases and conditions. Greater emphasis on measures to promote and improve health and well-being (as contrasted to treatment or prevention of disease) are desired by and important to everyone and are a prime focus of current efforts to improve health care in America. While there are significant scientific and logistical challenges in pursuing a health-promotion research agenda, there are compelling opportunities to explore the potential role of many CAM practices and interventions."

"Desired by and important to everyone," is a clearly stated understanding of consumer desire for more than restorative services for their health.  It is a sentiment that has been affirmed in recent surveys that have identified Americans' primary health interest in true prevention.

The difficulty is that while this clearly unmet demand from the real world looms over the health care establishment, that establishment lacks not just the organizational wherewithal to undertake it, it is a demand outside the scope of the purpose of the health care system itself.   As NCCAM starts to follow CAM use that is "already out there," it could begin to straddle both paths -- therapy and wellness -- that consumers have set out for it.