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Press Release: IVI and Sick Cells Release the Finding Equity in Value Whitepaper

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JOINT STATEMENT: IVI and Sick Cells Release the Finding Equity in Value Whitepaper

Alexandria, VA – October 20, 2022 – The Innovation and Value Initiative (IVI), a non-profit research organization committed to advancing the science, practice, and use of value assessment in health care, and Sick Cells, a national advocacy nonprofit for sickle cell disease (SCD) whose mission is to elevate the voices of the SCD community and their stories of resilience, today announced the release of the Finding Equity in Value whitepaper. This paper was co-created by IVI and Sick Cells in pursuit of a shared goal to advance racial and health equity in and through the practice of health technology assessments (HTA) in the U.S.

The decisions that shape the cost, access, and coverage of healthcare rely on judgments about the relative value of healthcare services and therapies, with direct consequences for racial and health equity. Health technology assessment aims to inform these decisions with objective, evidence-based estimates of value. As HTA plays an increasingly influential role in pricing and coverage decisions, it is essential to understand how racism and other biases arise in the HTA process and the potential implications for health equity.

“As HTAs are utilized more to assess value in healthcare, including within Medicare, their processes and results will affect health equity for already vulnerable populations,” said Jason Spangler, MD, MPH, FACPM, chief executive officer, IVI. “As a non-profit rooted in ensuring patient perspectives are incorporated in HTAs, we published this paper with Sick Cells to spotlight core insufficiencies that prevent our ability to make decisions that uphold health equity. The paper also highlights opportunities for all actors to improve practices that ensure patient lived experience is our compass to finding health equity.”

Finding Equity in Value provides an in-depth examination of potential equity implications arising in the HTA process. It identifies multiple interrelated factors with implications for racial and health equity, most of which derive from two key issues: small unrepresentative groups of HTA specialists have exclusive control over HTA decisions, and there is widespread bias and omission in scientific evidence and methods. The whitepaper illustrates how these factors influence real-world HTA processes using real-world case studies and provides recommendations to improve HTA processes so they better support health equity through action and change across all aspects of the healthcare ecosystem.

“Traditional value assessment methods exacerbate systemic racism in healthcare,” notes Ashley Valentine, MRes, co-founder and president, Sick Cells. “By decentralizing power, increasing BIPOC representation and including qualitative data as part of the evidence base, we can help prevent the perpetuation of racism in healthcare decision-making and improve access for and the quality of care administered to many people in this country.”

Learn more about Finding Equity in Value HERE.

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About the Innovation and Value Initiative

The Innovation and Value Initiative is an independent, 501(c)(3) tax-exempt, non-profit research organization dedicated to advancing the science and improving the practice of value assessment through development of novel methods and the creation and application of enhanced value assessment models to support local decision-making needs in healthcare.

About Sick Cells

Sick Cells is a national advocacy nonprofit for sickle cell disease founded on February 28, 2017, by siblings Ashley and Marqus Valentine. Sick Cells’ mission is to elevate the voices of the SCD community and their stories of resilience. In highlighting the grave disparities this community faces, they hope to influence decision‐makers and propel change at all levels.

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