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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