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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
1
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
2
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
3
Evidence-based medicine
and health care reform
• Comparative effectiveness research (CER)
– Research comparing alternative care options to
determine what works best for whom, under realworld 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
4
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
5
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
7
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-innation coverage for new magnetic treatment
• Supplemental screening options for women
with dense breast tissue
8
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
10
Conclusion
• 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!
11
Thank you
Steve Pearson
[email protected]
12