Alliance of Comparative Effectiveness Stakeholders
On April 3, 2009, public testimony on comparative effectiveness
research was given at a meeting of the National Advisory Council
for Healthcare Research and Quality. The testimony represents
the views of the presenter and not necessarily those of the Agency
for Healthcare Research and Quality (AHRQ) or the Department
of Health and Human Services (HHS).
The Council provides advice and recommendations to the Director,
AHRQ, and to the Secretary, HHS, on priorities for a national
health services research agenda.
Delivered Via Electronic Mail
Carolyn M. Clancy, M.D.
Director
Agency for Healthcare Research and Quality (AHRQ)
U. S. Department of Health and Human Services
540 Gaither Road
Rockville, MD 20850
Dear Dr. Clancy:
The Alliance of Comparative Effectiveness Stakeholders (ACES) includes patients,
providers, family
caregivers and their partners in patient care who will serve as a leading voice
for patients in the
debate on comparative effectiveness research (CER) to ensure that their concerns
are carefully and
fully considered by policy-makers as CER initiatives are approved and implemented.
Through
education, information-sharing, and coordination with other CER coalitions
and advocacy groups,
ACES aims to preserve access to care, support formal stakeholder involvement
in CER as well as
assure data and methods used in CER include patient and provider perspectives.
The undersigned members of ACES appreciate the opportunity to share these
comments as the
National Advisory Council for Healthcare Research and Quality ("Council")
works to develop
recommendations for AHRQ and the Secretary of Health and Human Services (HHS)
regarding
priorities for a national health services research agenda. ACES members have
adopted a set of
principles that we recommend for the Council's consideration as it works
to identify
recommendations for CER:
- An effective CER initiative will require a continuing dialogue between
stakeholders and policy-makers.
- Transparency of decision-making and broad stakeholder input must be
ensured.
- Cost containment cannot be the primary focus of CER.
- CER must not limit patients' access to necessary treatments.
- CER must not restrict the practice of medicine.
- CER must recognize and encourage new innovations in patient care.
- An effective CER initiative must be structured to meet the needs of
an increasingly diverse patient population.
Given the enormous increase in funding to Federal Agencies for comparative
effectiveness research,
we respectfully urge the Council to ensure that its recommendations reflect
the necessary data
sources, analytical constructs, and methodological tools to conduct such broad-based
research and
produce meaningful results. The American Recovery and Reinvestment Act invested
significant
funding into the ongoing AHRQ comparative effectiveness research program, and
we believe a sound framework must be established to ensure those dollars are
used appropriately broad public input and transparent decision-making as recommendations
are determined, including
direct participation by private-sector advocates for patients, caregivers,
providers and other key
stakeholders. Transparency is a critical component to "doing it right." There
has been a strong
push for transparency in the Obama Administration, and we hope that the Council
will conduct its
deliberations on CER priorities in public, with an opportunity for stakeholders
to participate fully in
these important discussions.
We would also note that recommendations for CER should include populations
where a lack of
scientific data currently exists, including research on at-risk and under-served
populations,
individuals with disabilities and the chronically ill. Finally, we would again
emphasize that CER
must focus on the development of appropriate clinical evidence—not
the development of payment
and coverage policy recommendations that would restrict patient access and
physician practice based
on CER findings.
We thank you for considering our views.
Sincerely,
- Alzheimer's Foundation of America
- American Medical Rehabilitation
Providers Association
- Eli Lilly & Company
- Friends of Cancer Research
- Medical Device Manufacturers Association
- Men's Health Network
- Millennium Pharmaceuticals
- National Alliance for Caregiving
- National Council for Community Behavioral Healthcare
- National
Hispanic Medical Association
- National Minority Quality Forum
- Treatment Effectiveness Now Project
Co-signing Members of the Alliance of Comparative Effectiveness Stakeholders
cc: Members of the National Advisory Council for Healthcare Research and Quality
Return to Contents
540 Gaither Road Rockville, MD 20850