Our panelists included Ms. Sue Sheridan, the Director of Patient Engagement forPCORI. Sue discussed with us patient-centered outcomes research, particularly how PCORI is “doing research differently” by engaging patients from topic solicitation through dissemination.
We also welcomed Dr. Kristin Carman, a Vice President at the American Institutes for Research (AIR). She is well regarded for her work on assessing the performance of healthcare organizations and determining how best to enable improvement in organizational performance. Kristin is taking the idea of patient and family engagement and developing the research to support its effectiveness in improving health outcomes. She discussed with us her work on a Roadmap for Patient and Family Engagement, including its implications for the development of interventions and policies that support patient and family engagement, and the research agenda needed to investigate how such engagement leads to improved outcomes.
Ms. Sally Okun joined us from PatientsLikeMe, an online patient-powered research network. She is responsible for bringing patient voice and insight to diverse advocacy and health policy discussions at the national and global level. Sally also serves as the company’s liaison with government and regulatory agencies. She discussed with us the PatientsLikeMe Open Research Exchange platform and its use for research and developing patient-reported outcome measures.
Dr. Tanisha Carino joined us from Avalere. She is a recognized thought leader in health technology assessments and comparative effectiveness research and the role of quality and performance measurement in U.S. healthcare. Tanisha discussed with us the work of Avalere in supporting alternative payment models, and the development and use of patient-reported outcome measures.
Our panelists connected the dots among the conduct of patient-centered outcomes research, the infrastructure needed to support such research, and the use of that information to support clinical decision-making. Clearly, to be empowered, patients need information that is useful to them and a health system that drives personalized health decision-making. As was noted by one question from our audience, patients are often the experts in their own health, especially those with chronic conditions, and therefore should have a strong voice in their treatment decisions. A truly patient-centered health system will recognize the patient’s own expertise in their health care. Yet, financial incentives often undermine this kind of shared decision-making between the provider and the patient.
In the forum discussion, it was recognized that financial incentivizes set up in alternative payment models—such as bundled payments and value-based payment models—will have a significant impact on patient access to care. If developed appropriately, APMs can help coordinate and drive patients toward high-value care. However, we must be careful not to restrict patients to certain predetermined treatments based on evidence of both cost and clinical effectiveness based on population averages. Patients are not “average” and treatment choices should be based on individual patient preferences and needs. I was pleased to hear from our panel that they agreed that we must fit new payment models into a patient-centered system that embraces patient-centered care and supports patient/physician shared decision-making.
More than ever, I came away from this discussion knowing that investments in patient-centered outcomes research and dissemination, quality measures, patient-reported outcome measures, and shared decision-making tools can support an evolution to a patient-centered health system if the right incentives exist to use them appropriately. I look forward to continuing our work to make a patient-centered health system a reality!