Evidence and the next stage of health care reform why consumer engagement is so important
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Evidence and the next stage of health care reform: Why consumer engagement is so important. Steven D. Pearson, MD, MSc President, Institute for Clinical and Economic Review. What do we mean by “evidence?”. “Evidence” can have a bad aura among consumers and consumer advocates

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Evidence and the next stage of health care reform: Why consumer engagement is so important

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Evidence and the next stageof health care reform:Why consumer engagement is so important

Steven D. Pearson, MD, MScPresident, Institute for Clinical and Economic Review


What do we mean by “evidence?”

  • “Evidence” can have a bad aura among consumers and consumer advocates

    • Population-based instead of about the individual

    • Applied by insurers in ways that restrict access to tests and treatments desired by patients

  • Evidence-based medicine is the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients.

    • Sackett, 1996


Why better evidence became part of health care reform

  • Much of what doctors do is not based on good evidence

    • Does FDA approval mean there is good evidence?

    • Lack of good evidence commonly leads to inappropriate and often unnecessary treatment

      • Autologous bone marrow transplant for metastatic breast cancer

      • Generic drugs for rheumatoid arthritis found to be as good as more expensive and risky new drugs

      • “Tens of thousands of women each year might be able to skip at least some of the grueling treatments for breast cancer — which can include surgery, heavy chemo and radiation — without greatly harming their odds of survival.”

      • Choosing Wisely – will be discussed by Dr. Santa


Evidence-based medicine and health care reform

  • Comparative effectiveness research (CER)

    • Research comparing alternative care options to determine what works best for whom, under real-world conditions

      • Systematic review of existing published evidence

      • Generation of new evidence through clinical trials but also clinical registries and existing database analyses

  • Patient-centered outcomes research (PCOR)

    • PCORI

  • Health care reform did not focus on the evidence comparing doctors and hospitals


Why consumer engagement can be so powerful

  • Helping to identify research topics

    • PCORI

    • Things over which patients have control, e.g. diet, exercise

  • Helping to identify outcomes that are more patient-centered

    • Medications for pediatric seizures

  • Helping to interpret and guide the application of results

    • Examples from CEPAC and CTAF



  • Collaboration among

    • Patient groups

      • Connecticut Center for Patient Safety

      • Maine Quality Counts

      • Center for Healthcare Decisions

      • Patient Advocates in Research

    • State Medicaid programs

    • Private plans

    • Large physician-hospital groups

  • Independent Council meets in public to discuss tailored evidence reviews on effectiveness and cost, to vote on evidence, and to make recommendations for best practice and policy

  • All stakeholders work together afterward to implement the findings


New England CEPAC: Topics and Impact

  • Treatments for Attention-Deficit Hyperactivity Disorder (ADHD)

    • Helped interpret evidence and disseminate to patient networks in order to shift to behavioral therapy for youngest children

  • Treatment for severe depression

    • Perspectives on severity of condition and impact on families part of deliberation that led to first-in-nation coverage for new magnetic treatment

  • Supplemental screening options for women with dense breast tissue


Supplemental screening for women with dense breast tissue

  • Consumer engagement critical in

    • Perspective on importance of the concern for masking as opposed to breast cancer risk

    • Judgments of the relative balance of benefits of identifying additional cancers and the harms of false positive results, biopsies, and anxiety

    • Determination of the information patients want and how to present it to women (see handout)

    • Dissemination of the report and materials to patient groups throughout California, New England, and nationally



  • Evidence, its generation, interpretation, and application to improve patient outcomes and the patient experience, is an important component of the next phase of health care reform.

  • Consumers have a critical role to play in advancing the best aspects of evidence-based medicine in the interests of patients now and in the future.

  • There is a shift occurring among clinicians and researchers that offers a new opportunity for engagement. Seize it!


Thank you

Steve [email protected]


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