'Meaningful' EngagementPIPC strongly supports meaningful patient engagement throughout the healthcare system. The word “meaningful” is of utmost importance as it indicates that patient engagement will empower the patient in some way. PIPC was at the forefront of advocating for patient engagement in comparative clinical effectiveness research by PCORI to assure that the research questions actually mattered to patients and would ultimately be usable to improve patient care - but our work does not stop there. For information coming from patient-centered outcomes research to be applied and to improved care decisions, it must be understandable, and patients and providers must be able to access it easily to discern its relevance to their unique situations. Patients must be empowered with a voice that affects their care decisions based on the information available to them.
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Infrastructure for Engagement |
For patients to be empowered, there must be an infrastructure for patient engagement in healthcare. For example, PCORI has an engagement staff dedicated to patient engagement. Also, Congress specifically allowed the Food and Drug Administration (FDA) to develop and implement strategies to solicit the views of patients during the medical product development process and consider the perspectives of patients during regulatory discussions as part of the FDA Safety and Innovation Act in 2012. This was a significant achievement for patient-centeredness in the drug development process. Additionally, the FDA is increasingly focused on patient-reported outcomes in their policies and quality improvement programs. These developments highlight the recognition by policymakers that patients should not be in the back seat, but should instead be driving research, and are capable of translating patient-centered research into health care decision-making.
Unfortunately, there is little infrastructure dedicated to patient engagement in other government agencies which manage much of the public healthcare system. And PIPC believes there should be. The Department of Health and Human Services is managing programs such as Medicare, Medicaid, alternative payment models, substance abuse programs, disease control, and other clinical research programs that have no obligation to engage patients in their decision-making, and have little infrastructure to welcome patient engagement. And navigating where to engage and how to engage is time-consuming and difficult, providing a barrier to the many patient groups and self-advocates who are interested in contributing to the policies that impact their own healthcare. Who better to advise on the effectiveness of publicly-funded health care programs than patients themselves! Join us in advocating for a more robust infrastructure for patient engagement throughout the healthcare system, and particularly in the government’s health care agencies. |