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Panel Detail

Workshop - Who Tells Their Story? Determining Value from the Patient Perspective

Monday, November 14, 2016
2:45 PM - 4:00 PM


Leslie Kelly Hall, Senior Vice President, Policy, Healthwise
Madeleine Konig, Senior Policy Analyst, American Heart Association
Jean Moody-Williams, Deputy Director, Center for Clinical Standards and Quality, Centers for Medicare and Medicaid Services
Martin Zagari, Vice President, Global Health Economics, Amgen


Josh Seidman, Senior Vice President, Avalere Health

In 2015, FasterCures and Avalere Health sought to define the benefits of new treatments within the expanding universe of "value frameworks" and found that patient perspectives on value were not reflected or incorporated in these frameworks in a meaningful way. A Partnering for Cures (P4C) workshop on this issue that same year led to a collaboration among stakeholders from across the health care ecosystem to develop a "patient-perspective value framework."

One year later, Avalere and FasterCures held a second P4C workshop to present a draft framework methodology for public comments (which are being solicited online through December 2016). Avalere Senior Vice President Josh Seidman outlined the five domains of the framework:

Within each domain the framework identifies a variety of supporting measures, data sources and methods that could contribute to an analysis of value from the patient perspective.

Seidman described the potential applications of the framework as follows:

Seidman then turned to the speakers from the patient, payer, and product developer communities for their views.

Madeleine Konig, senior policy analyst at the American Heart Association, said that the value and cost of treatment and care has been a focus of the Association since it announced in 2014 its inclusion of value assessments in the clinical guidelines that it issues with the American College of Cardiology, because of accelerating health care costs and the need to ensure value for patients. She was excited about the framework's focus on outcomes of greatest interest to patients, from quality of life to the complexity and administrative burdens of treatment (including for caregivers). It also creates opportunities to highlight data sources such as patient experience registries that are valuable in creating a more accurate picture of the benefits of treatments.

Jean Moody-Williams, deputy director of CMS's Center for Clinical Standards and Quality, was enthusiastic about the potential of this framework to inform existing value frameworks, as well as the thinking and decision-making at CMS as it increasingly focuses on quality improvement and value-based payment. "As we implement MIPS [the Merit-Based Incentive Payment System] and advanced APMs [Alternative Payment Models], they have mandates that there must be patient input, not just one expert on a panel." This type of framework could help the Centers understand how to get robust input from patients in a variety of areas, including policy design, benefit design, and coverage with evidence development.

Lesly Kelly Hall, senior vice president for policy at Healthwise and a health information technology expert, painted a picture of how data about patient preferences and experiences can and will be collected and applied more frictionlessly and seamlessly in the near future-"to integrate it into clinicians' workflow and patients' life flow" in a way that will enable these kinds of value assessments "all along the continuum" of health care. We need to "ask for data in not black-and-white terms - today we don't ask for narrative, it might be too noisy." However, that is changing quickly.

Martin Zagari, vice president for global health economics at Amgen, believes that "we have a chance to do it better and more comprehensively than ever before" with our ability to gather and analyze complex data. "The hardest thing will be to resist going down the well-worn track.Most of the new frameworks are going down that path. Patients' stories are data, we need to do something to capture them." In response to a question about whether there will be a "winner" among existing value frameworks, Zagari argued that "we don't want one winner. We want a rich variety of frameworks that give us a view of all of the data. When one framework gains hegemony, it stops evolving."

FasterCures and Avalere are looking forward to receiving input from all stakeholders by the end of December here.