Testimony on Comparative Effectiveness Research

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).

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

Current as of April 2009
Internet Citation: Testimony on Comparative Effectiveness Research: Alliance of Comparative Effectiveness Stakeholders. April 2009. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/news/newsroom/speech/aces.html