Policymakers Should Choose Patient Empowerment Over Paternalism
Over the last few years, I've been very outspoken on the need to engage patients and people with disabilities in efforts to define the value of health care. Engagement has become my ministry because, frankly, what we often find is "token" engagement - a pat on the head, with no real impact on policy development and implementation. I thought we were making real progress on engagement in this administration. It seems I was wrong.
Patients and people with disabilities have consistently and strongly opposed misuse of comparative effectiveness research (CER) and cost effectiveness in government policies that drive beneficiaries to one-size-fits-all treatments. We've communicated our position to policymakers on strategies to build a patient-centered health system. Patient stakeholders have made their views clear as participants on advisory panels, in formal regulatory comments, in letters, and in policy recommendations. We have provided consensus recommendations from patients and people with disabilities on policy solutions that would build on the Affordable Care Act's (ACA) provisions to fund patient-centered outcomes research and to authorize a shared decision-making program. And in response, we've gotten a pat on the head.
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Patients and people with disabilities have consistently and strongly opposed misuse of comparative effectiveness research (CER) and cost effectiveness in government policies that drive beneficiaries to one-size-fits-all treatments. We've communicated our position to policymakers on strategies to build a patient-centered health system. Patient stakeholders have made their views clear as participants on advisory panels, in formal regulatory comments, in letters, and in policy recommendations. We have provided consensus recommendations from patients and people with disabilities on policy solutions that would build on the Affordable Care Act's (ACA) provisions to fund patient-centered outcomes research and to authorize a shared decision-making program. And in response, we've gotten a pat on the head.
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