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Equity must be at the root of value

Each day, another report or study emerges demonstrating the impact of racism on the health of our society. Whether based on data-driven research or derived from personal experience in care, these stories are a sobering reminder of the deeply rooted biases in research, data collection, treatment access, and care delivery.  They are also evidence of an accelerating collective focus on health equity that emphasizes accountability and the action required from all stakeholders to enact meaningful change.

The Innovation and Value Initiative’s (IVI) founding mission is to improve both the science and the practice of value assessment to ensure it is equitable, represents multiple perspectives, and adapts to the ever-evolving knowledge derived from both clinical research and lived experience of patients and families. Through intentional engagement on the complex limitations of current methods and practice, IVI has demonstrated an impact and continues to spur practitioners to act with greater transparency, to test flexibility in methodologic approaches, and to prioritize the complexity of diverse patient perspectives. In addition to patient centricity and transparency, a hallmark principle underpinning value assessment in the U.S. must be supporting health equity.

Start with better questions

In 2021, IVI convened a thought leadership series to consider the issues and opportunities for improving health equity in value assessment. Through these challenging public conversations, IVI highlighted long-standing insufficiencies in value assessment frameworks and processes. These include issues with power and representation in decision-making, data sources and population heterogeneity, and the suitability of comparative effectiveness analysis (CEA) methods and the resulting outputs to support equity in real-world decisions.

In a prior opinion piece, IVI highlighted key areas for action stemming from the series. Almost a year later, these are worth revisiting, with some augmentation for current context:

  • The diversity of patients and their experience demands investment in representative research and co-leadership. 

“Patients wear multiple identities, and we need to think through a lens of inclusivity to understand patient heterogeneity.”
– Upsal Basu Roy, PhD, MPH, LUNGevity Foundation
– Session 1: Meaningful Action Toward Health Equity

  • Measurement of social drivers of health and a full range of impacts important to patients, families, and caregivers are both relevant and essential to equity in value.
  • Methods to incorporate equity perspective in value and health technology assessment must be tested in real time with a focus on continuous and transparent learning.
  • Policy at both organizational and governmental levels must uphold the importance of health equity as a fundamental component of value. 

“[We must] incorporate equity directly into definitions of value.”
– Joshua M. Liao, MD, MSC, FACP, University of Washington School of Medicine
– Session 3: Walking the Talk – How Should Policy Uphold Equity in Value Assessment?

More recently, we have explored with patient communities in sickle cell disease and rheumatoid arthritis the ongoing impact of racism that permeates research, policy, and care delivery enterprise. Such biases fundamentally influence the conceptualization and measurement of value and, without correction, will yield invalid “answers,” drive inappropriate and wasteful resource use, and perpetuate racism in health care.

Complexity must not be a barrier to action

From these early interactions, we have learned that true allyship requires commitment to frank discussions, consideration of all solutions and a focus on co-leadership from under- and un-represented communities across multiple dimensions, including but not limited to race, gender, age, disability, and geographical and economic status. To address this complex challenge head on, IVI launched a multistakeholder Equity Initiative this past April.

This multi-year Equity Initiative is focused on defining measurable and actionable changes to value assessment frameworks that realign processes for greater transparency, representation, and prioritize data generation and economic health development methods to support health equity.  Guided by the expertise of a cross-sector Steering Committee, IVI is engaging with thought leaders across stakeholder communities and in formats ranging from interviews to roundtable discussions and a consensus-focused summit. Through these engagements, IVI and its partners are focused on learning from other disciplines focused on health equity, building on multiple equity-focused frameworks, and incentivizing consensus and implementation.

Ultimately, IVI aspires to create a learning environment for continuous testing and improvement of health economic modeling that can answer real-world questions and adapt to complex, and evolving evidence.  We are purpose-driven in this pursuit – as value assessment should reflect the complexity of real people and support decisions that are relevant to their lived experience.

IVI is not alone in this vision, and there is historic commitment to implementing foundational changes that must occur to realize health equity.  Though time-intensive and complex, implementing real change will require radical collaboration to redefine the assumptions, processes, and methods that guide measurement of value.  We call on patient communities, payers, innovators, employers, researchers and others to join us in the exploration of possibilities and the articulation of actions fundamental to equity in value assessments.