Testimony on Comparative Effectiveness Research

Hazel Moran, National Working Group on Evidence-Based Health Care

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).

April 2, 2009

Dear National Advisory Council Members:

As the convener of the National Working Group on Evidence-Based Health Care (The Working Group), I am pleased to speak on behalf of consumers and patients in support of comparative effectiveness research (CER).

Founded by Mental Health America, the Working Group is a collaboration of approximately 40 patient and consumer organizations, professional societies, providers and other interested stakeholders that want to help shape the initiatives in evidence-based healthcare (EBH) in order to improve the care and outcomes available for the millions of individuals we represent.

Since 2005, we have worked to broaden participation of patient groups in all aspects of EBH to improve the usefulness of this information for consumers and clinicians as well as to assure that the locus of decision making remain with the patient and the consumer. We focused principally on comparative effectiveness reviews and evidence dissemination as two key components of the EBH movement.

Members of the Working Group have been actively engaged with AHRQ by offering consumer and patient perspectives on materials generated by the Effective Health Care Program. Working Group members have participated in public forums; they have offered comments on priority setting, suggested key questions for the reviews, and critiqued draft reviews; and they have reviewed dissemination materials from the Eisenberg Center. For example, Mental Health America participated in the review and dissemination of several publications including AHRQ's Summary Guides on the Off-Label Use of Atypical Antipsychotic medication and the treatment of Depression. Our involvement has been positive and we are pleased with AHRQ's efforts to modify final products based upon our recommendations and concerns.

The American Recovery and Reinvestment Act of 2009 (ARRA) allocates $1.1 billion for comparative effectiveness research, with AHRQ receiving $300 million of these funds. To generate the balanced and practical clinical evidence that the legislation envisions, it will be critical for AHRQ to incorporate the patient perspective into the direction and design of CER.

The creation of new evidence and new decision support techniques to inform patient's treatment decisions offer great potential to improve care. To help realize this progress, patients and consumers can provide important support to AHRQ's research in three principal ways.

First, they can advise on topic selection. Second, by specifying the information they need to make decisions about their care, patients can help determine what data studies should capture. Third, patients can provide valuable public support for AHRQ's work.

Given the new funding allocated to AHRQ and the agency's unique expertise, we propose three ways to deepen patient involvement in CER.

  • Establish a position at AHRQ for a patient advisor on CER. The FDA's Patient Representation Program is an excellent model for this kind of participation.1 The program educates patients to be effective advisors, and then includes them on advisory boards that correspond to their particular medical experience. AHRQ could similarly inform patients on some basic scientific and methodological concerns of CER and then solicit their input.
  • Sponsor research to develop and test methods for integrally involving patients in the full CER process. In order to ensure robust patient inclusion, there must be better understanding of the most effective and constructive ways for patients to engage in identifying problems Constructing CER trials, interpreting results and assisting in dissemination and implementation to assure their effective application to clinical decisions. AHRQ can draw on its network of experts to study, recommend, and implement practices that elicit true public participation.
  • Create a national citizens advisory board to help AHRQ as well as patients and consumers process more elusive or ethically complex decisions. A good model for this is the Citizens Council that the UK's NICE convenes.2 NICE charges the Council with conveying the views of the public both to the Institute and to the groups that NICE commissions for appraisals and clinical guidelines.

The National Working Group on Evidence-based Health Care shares AHRQ's vision of an evidence-based healthcare system that responds to patient and consumer needs. Through its continued leadership, AHRQ can ensure that patients/consumers have a meaningful voice in CER, and that CER practitioners can draw on the abundance of useful data and insight that patients/consumers can bring to the discussion.

We look forward to our continued involvement with AHRQ to promote meaningful patient and consumer voice in comparative effectiveness research.

Sincerely,

Hazel Moran

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Current as of April 2009
Internet Citation: Testimony on Comparative Effectiveness Research: Hazel Moran, National Working Group on Evidence-Based Health Care. April 2009. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/news/newsroom/speech/moran.html