How Is the Multiple Sclerosis Community Engaging on Value Assessment?

In health care, value is a concept that means different things to different stakeholders. That’s why we wanted to hear from the multiple sclerosis community, which has been very engaged in conversations about how the value of multiple sclerosis (MS) treatments is being assessed, particularly by organizations such as the Institute for Clinical and Economic Review (ICER).

NPC President Dan Leonard caught up this week for a Q&A with Lisa Skutnik, President of the MS Coalition. The MS Coalition is a non-profit organization that consists of nine separate multiple sclerosis organizations that collaborate to improve the quality of life for those living with MS. Collectively, they provide a vast array of information, resources, and education to individuals living with MS. Together, they present a unified voice to influence regulatory and legislative issues that may negatively impact the lives of those living with MS.

Dan Leonard (DL): Lisa, thanks for joining me for this conversation. First, please tell us about some of the challenges facing your constituencies, particularly in the area of value assessment.

Lisa Skutnik (LS): Value assessment frameworks have been developed to aid in the determination of the ‘value’ of a therapy as based upon clinical effectiveness and cost. These analyses exclude the consideration of the patient’s experience with these therapies, their goals of treatment, as well as consideration of patient preferences that directly affect the selection of and adherence to specific therapies. The patients should be at the center of these decisions and the patient’s voice needs to be included in any value assessment.

DL: Patients with MS are all unique in how their lives are impacted by their condition, as well as in how they manage their condition based on what treatment works for them. Do you believe that value assessment frameworks will be able to capture and account for all of this differentiation, or are you concerned that a one-size-fits-all approach will miss these important nuances?

LS: The heterogeneity of multiple sclerosis creates significant challenges to the use of these value frameworks. Individuals living with MS experience dramatically different disease courses and clinical manifestations. Individuals also have strong preferences about their choice of medical therapies and shared decision-making with their physician is critical in both the selection and the adherence to a specific therapy. Value assessments do not take these variations into consideration. The MS Coalition hopes that any conclusions reached through this ICER analysis will consider the implications of the   heterogeneity of MS as well as the importance of the patient’s perspective and his/her direct involvement in decision making.

DL: ICER has been considering MS treatments under its value assessment framework – how has your organization been involved/engaged in this process?

LS: The MS Coalition contacted ICER directly once we learned of their intended review of MS disease-modifying therapies. We educated ICER on the MS patient organizations that represent many living with the disease and sought to become involved in the review in order to ensure that the patient’s perspective would be included in the review. ICER staff welcomed our involvement and after further discussions, the MS Coalition proposed to develop a patient survey about disease-modifying therapies in order to provide direct evidence of patient preferences, goals of therapy and identification of concerns or barriers in accessing their MS medications that could be incorporated into their value assessment. We completed the survey with over 16,000 responses from people living with MS. People with MS made it clear that the issues of upmost importance are delaying disability and maintaining independence. The MS Coalition is disappointed that these survey results were not incorporated into the network meta-analyses in order to contribute important information from the patient perspective to the overall results of the ICER review.               

DL: Do you think the revised ICER framework will do enough to incorporate patient preferences and feedback?

LS: The recent proposed revisions to the ICER value framework include an attempt to shed more light on the experiences and values of patients in the reviews. Specific methods for including other benefits and contextual considerations, such as patient health benefits or adherence data, may be helpful. However, these factors will not be incorporated into the network meta-analyses. Further revision is needed in order to ensure that patient preferences and experiences are adequately incorporated into any analysis of the use and benefit of a medical therapy.

DL: How could ICER’s patient engagement process be improved?

LS: The MS Coalition sought out contact with ICER. It is hoped that in the future, ICER will assume a more active role in ensuring inclusion of the patient perspective through: 1) identifying the patient organizations that represent the disease type; 2) seeking out their early and active involvement in the review and 3) formalizing the manner by which patient organizations and patients may contribute pertinent data and evidence for the review.

DL: Thanks again for your time.

For additional information about CMSC, visit their website. For more about value framework assessments, check out NPC’s Guiding Practices for Patient-Centered Value Assessment and Current Landscape: Value Assessment Frameworks and watch the video from our conference, Assessing Value: Promise and Pitfalls.