Authors: Alan Balch and Donna Cryer
The vast majority of experts agree that we could, and should, be doing a lot more to include input from patients in value assessment, from conceptualization to data inputs to implementation. The crux of the problem is that in today’s world, we end up with models that assign a value to treatment, devoid of useful information to patients. Patients care about data related to aspects of a treatment like its side effects and the burden the treated patient may place on their families or caregiver. They also differ in their preferences — the priorities for care delivery and outcome that are important to them. For example, some patients may prefer a treatment that offers improved mobility and independence over one that has the potential for greater survival. In short, today’s models are based on math, but the math doesn’t necessarily have meaning.
The question is, how do we go about improving value assessment in a way that is productive and meaningful? From its inception, the Innovation and Value Initiative has championed including patients at the inception of our work to define the factors that are relevant to their lived experience, and to explore methods to incorporate those perspectives inside the complicated calculations. IVI’s 2018 White Paper, Partnering with Patients, outlined the principles and tools the organization would employ to involve patients in our research. As a result, patients and patient organizations contributed meaningful input, review and recommended improvement to the development of IVI’s first two disease-specific models examining value in rheumatoid arthritis and non-small cell lung cancer treatments.
Like many others, we’ve learned through doing that meaningful patient involvement isn’t a linear path and that creating a learning system for how to do it well is a long-term commitment. And, we’re pleased that other organizations are also prioritizing this important partnership, as indicated by ICER Executive Director, Steve Pearson’s commentary earlier this year,
“…. We can’t even begin to understand the value of new drugs without hearing from patients, and we will never be able to have the honest, mature, and difficult conversation about prices and coverage unless patients are at the table.”
As our next step in ensuring that patients are intimately involved in every step of the value assessment process, IVI recently announced the formation of a Patient Advisory Council. Comprised of patient-advocacy leaders with a breadth and depth of experience, the Patient Advisory Council will advise the Board of Directors on our research agenda and approach, support our patient engagement strategies, improve how we use patient-driven real-world data, and ensure we communicate our research findings with patients more effectively.
The future of value assessment means working towards research that includes patient insights, experiences, and expertise from start to finish. This is an ambitious charge, and will require the challenging conversations about evidence, prices, methods and coverage that are sticking points in our national conversation about value. The good news is this group is ready to have those hard conversations in an open and frank way, helping to identify and test patient-defined and patient-centered solutions.
We are excited for the Council to begin its work and we look forward to sharing their insights in future columns.