First, we recommended that policymakers explicitly align policy with innovation. If existing regulatory or reimbursement policy is a barrier to either the development of improvements in the science or patient access to these advances, then those barriers should be re-evaluated and removed.
Second, we recommended that patients have a meaningful voice. In all appropriate venues where policy around the value of innovation is being measured, the patient voice should be included and ultimately reflected in the decision-making process.
Third, we urged policymakers not to impose blunt access restrictions to medical options that are best suited to individual patients. Medical management tools should be patient-centered and not based on one-size fits all evidence standards.
Fourth, policies should allow patients to make informed choices from the range of clinical/care options. Patients and providers can both advance innovation and benefit from it when reliable, accurate information is more readily available through modern information sharing tools.
Fifth, policies should incorporate constructs that are designed with the help and expertise of the patient community. For example, PCORI created a new way to develop and design patient-centered outcomes research but the statute also includes protections around the misuse of innovative research.
Sixth, policymakers should ensure transparency and accountability as payment and delivery models evolve (i.e. ACOs and alternative payment models).
Lastly, we urged policymakers to make the conversation about innovation as broad as possible to maximize the value to patients. It should be holistic and view the needs of patients across the care continuum.
Meeting the principles of patient-centeredness will require a new way of approaching health care policy. A patient-centered health system will value patient engagement, and will applaud patients that are empowered and active in their own health. I am pleased to see policymakers seek out the opinions of patients on how to promote innovation and medical progress, and look forward to the Committee’s work.