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Value Assessment 2.0: The Next Generation of Tools to Address the Patient Perspective


We’ve managed to get patients more integrated into many areas of medical research, but a final frontier is putting patients into the discussion on value. FasterCures has long been engaged in work that strives to bring the patient perspective to the medical R&D process and, in partnership with Avalere, is committed to developing the first value framework that truly includes patient perspectives and addresses individual patient value considerations.

This Webinar, held June 1, 2016, featured a definitive tutorial on existing tools and frameworks, an exploration of the critical need for patients’ perspectives on value to be addressed, and an update on how payers currently use frameworks in a value-based environment and where that landscape is headed.

Speakers include:

  • Marc Boutin, CEO, National Health Council
  • Kate Goodrich, Director, Center for Clinical Standards and Quality, Centers for Medicare & Medicaid Services
  • Josh Seidman, Senior Vice President, Avalere
  • Margaret Anderson, Executive Director, FasterCures (moderator)

This free Webinar is part of FasterCures' Webinar series designed to spotlight innovative approaches to disease research.


How do we define value and who should define it? These two questions permeated the discussion during FasterCures’ June 1 Webinar, “Value Assessment 2.0: The Next Generation of Tools to Address the Patient Perspective.” More than 600 listeners signed up to hear from experts focused on value assessment – an issue of critical importance to stakeholders throughout the biomedical ecosystem – including patients who access care, providers who deliver care, industry representatives who develop therapies and payers who pay for care.

Moderated by Margaret Anderson, executive director of FasterCures, speakers Josh Seidman of Avalere, Marc Boutin of the National Health Council and Kate Goodrich of the Center of Clinical Standards and Quality at the Centers for Medicare & Medicaid Services (CMS) shared their insights on how to define value, the differences among several new tools to assess value and how patients can play a larger role in these assessments.

Anderson kicked off the discussion by highlighting the increased focus of more and more patient groups on the delivery side of health care to ensure promising treatments are able to get from the regulatory finish line to the patients who need them the most. The recent proliferation of value frameworks has taken the conversation to a new level, but the perspective of patients is largely absent. In partnership with Avalere, FasterCures is working to develop the first value framework that truly represents and incorporates patient perspectives.

Crowded Landscape

To provide some background on how this conversation has evolved in just the past year, Seidman presented a timeline outlining the numerous frameworks, from the release of the Drug Abacus by Memorial Sloan Kettering in May 2015 to the American Society of Clinical Oncology’s (ASCO) Value Framework, the second version of which was released just the day before the Webinar. Seidman noted that this explosion of frameworks has allowed for an important dialogue to take place around how value should be measured and defined. Increasingly, and importantly, that conversation is also extending to identify the ways patient perspectives on value can and should be incorporated.

Seidman emphasized that when evaluating these frameworks, it is critical to consider the purposes for which each of these frameworks is designed. This sentiment was further echoed in the question and answer session by Steve Pearson, president of the Institute for Clinical and Economic Review (ICER), who noted that some frameworks are intended to help enhance shared decision-making while others are designed to inform a broader discussion around coverage, pricing and payment. Seidman also noted that each framework produces a different output based on slightly different considerations, and highlighted each of these in turn.

  • ICER framework: identifies a “value-based price benchmark” for a particular drug after considering not only long-term patient-level health benefits, but also the potential short-term budget impact
  • ASCO framework: produces a “net health benefit” score that is intended to give oncologists and patients a tool they can use together to assess the value of certain cancer drugs for a specific situation
  • Drug Abacus: generates an “abacus price” for a specific oncology drug based on the individual user’s (be it the patient, oncologist or payer) modification of six different criteria

None, however, considers patient perspectives in a meaningful way. Nor do they have a mechanism to arrive at a different outcome when patients and clinicians place different values on the same criteria. Seidman walked through the value considerations that really matter to patients, from out-of-pocket costs to the accessibility and usability of information.

As Avalere moves forward in partnership with FasterCures to develop a patient-centered value framework, Seidman noted that it will be critical to identify concrete and specific criteria that can help these frameworks evolve and advance in a meaningful way. As Seidman noted, “It’s one thing to talk about limitations of these frameworks – it’s entirely different to provide concrete, specific criteria to help support the evolution of these frameworks.”

Integrating Patient Perspectives into Value Frameworks

Building off Seidman’s remarks about identifying what is important from the perspective of the patient, Marc Boutin described the National Health Council’s efforts to create a value model rubric designed to help ensure that the patient perspective is integrated and reflected in value frameworks. Boutin reiterated the sentiment heard throughout the session that there is no real proxy for patient perspective: “You can’t assume that because you have a relationship with a patient as a provider or researcher that your perspective is the same as the patient.”

The NHC rubric looks at the entire framework development process and identifies six different “domains of patient-centricity” that should be considered at each stage of development:

  1. Patient Partnership
  2. Transparency to Patients
  3. Inclusiveness of Patients
  4. Diversity of Patients/Populations
  5. Outcomes Patients Care About
  6. Patient-Centered Data Sources

Boutin explained that the rubric then looks at each of the characteristics of meaningful patient engagement and outlines very specific hypothetical examples of high engagement and low engagement in the model development process. This tool can then be used to enable framework developers to evaluate and assess the patient-centricity of their own framework or use the rubric as a tool for future updates.

Evolution at CMS: Shift from High Volume to High Value

At the Center of Clinical Standards and Quality at CMS, Kate Goodrich has a premium vantage point on how value is assessed. She noted that CMS has been “extremely engaged” in efforts to better define value so that the system can transition to paying for high-value care, rather than paying for volume.

Goodrich began with an overview of how the characteristics of the traditional fee-for-service system compare to the “evolving future state” of a health-care delivery system focused on value where patients and their families define the outcomes they want to achieve, enabling CMS to pay for “what works.”

One effort to help move toward a more value-based system involves what Goodrich described as a “listening tour” with clinicians, patients and consumers. By engaging with these stakeholders, CMS is seeking to really understand their perspective on what the right kind of measures are and ensure that CMS is truly paying for value and paying for what works. Echoing the sentiment expressed by other speakers, Goodrich also highlighted the need to understand what value means to the patient, acknowledging that value doesn’t always mean the same thing to patients as it does to “those of us inside the Beltway.” To that end, CMS is “continuing to refine and further define what value means… not only for the clinician providing care but also for the patients who are impacted the most.”

Questions from the Audience

Participants then had a chance to address several questions that came in from listeners in advance of and during the Webinar.

  • Anderson asked Pearson to identify what he sees as the most challenging aspect of integrating patient perspectives into frameworks. Pearson noted that one of the biggest challenges is understanding and identifying how and when to engage with patients. He acknowledged that ICER can do better to help patients understand where there are opportunities to orient the discussion and help identify other evidence and outcomes important to the value discussion. He noted that ICER is working to develop a template that will make it easier for patients to know when and how to engage.  
  • Anderson next turned to Goodrich and asked how patient perspectives will be integrated to help CMS reach its goals of moving to a value-based system. Goodrich noted that this is a major area of focus and that they “talk about it every single day.” Specifically, CMS is looking to incorporate patient input very directly by getting patients to be involved in conversations on measurement as well as public reporting.

It is clear that this discussion of value, what it means, how we measure it and ultimately how we pay for it is of critical importance to all players in the biomedical research system. Defining value in a way that is meaningful for patients is no small task, but we at FasterCures look forward to continuing to work with all stakeholders to do so effectively.