Who Are We? Taylor Walsh Reports Give-and-Take as NCCAM Advisers Discuss Proposed Strategic Plan

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.

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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.”

So reports Taylor Walsh in this fascinating account of an advisory council which, to the credit of Killen and the other NCCAM leaders, appears to be marked by an openness to dialogue that was sometimes squelched in an earlier NCCAM administration. Walsh, a consultant and writer on integrative health and digital
media in Washington, DC, was most recently seen in the Integrator in this report on a February 2010 NACCAM meeting.
  Thanks for this, Taylor.

___________________________________

NCCAM Advisory Council Meeting: 9-3-2010

–  Taylor Walsh to The Integrator Blog

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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.


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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.”


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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.

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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.


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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.


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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.”  


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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:

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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.

___________________________________

   
 
 Elevate Strategic Objective #3,

real world and health outcomes,
to #1, where Harkin wanted it
and where it belongs. Then go
for it! We have a healthcare
 crisis, don’t we?


Comment: Who are we? The
short answer is that we are in the real world, involved in
healthcare of tens of millions, at least half of whom use or practice with a health-enhancing orientation.

Killen notes that all of NIH is
“struggling with effectiveness research.” Had NCCAM embraced the real
world research agenda that US Senator Harkin in his wisdom charged NCCAM to embrace in 1998, NCCAM would be the hands-down NIH leader in answering this question, with 10 years of significant experience. Instead, NCCAM was afraid of its destiny and tried as hard as it could to fit in and look like all of the others, favoring drug research. Notably, NCCAM still does. The 2011-2015 strategic plan still has “CAM pharmacologicals” as Strategic Objective #1.

Now, imagine it’s 2020. All of NIH may (finally) be struggling with how to research strategies for enhancing health. NCCAM is beginning to belly up to these questions, the asserted end points of most integrative practices. De Kosky is right. Leave the “vanilla” to others. Embrace these.  Go for the gold of real world significance and health creation. That’s the way to leave in the dust any questions of whether NCCAM has value. Shoot, NCCAM might significantly impact human health.

Elevate Strategic Objective to #3 to #1, where Harkin wanted it, and where it belongs. Then go for it! We have a healthcare crisis, don’t we?



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