The work of HTA organizations and others conducting value assessment impacts how treatments are covered, including their cost sharing. We urge organizations conducting value assessment to define value consistent with the values inherent in the nation’s civil rights and disability laws established to ensure everyone receives high quality care with the goal of health equity. The report’s recommendations focus on the need to address data gaps, methodologies contributing to health inequity, and the need for improved engagement, particularly among people excluded from the data.
Recommended Focus for HTA Organizations and Others Engaged in Addressing Data Gaps
- Identify explicitly the limitations of data as they relate to a value assessment’s conclusions for omitted subpopulations.
- Invest in addressing data gaps before conducting a value assessment, provide resources to fill data gaps during a value assessment, and allow time for the development of partnerships to support collecting representative data as part of an ongoing data collection process.
- Recognize the heterogeneity among patients based on their social identities, geographic communities, and other factors — such as access to health facilities — and incorporate that information into the base case assessment of a treatment’s value.
Recommended Focus for HTA Organizations and Others Engaged in Testing and Validating New Methods to Eliminate Bias
- Ensure methods incorporate the values of patients and people with disabilities, starting with systematic reviews and direct engagement with the patient and disability communities to ensure their values are considered in the base case.
- Avoid valuing treatments based only on averages and avoid reliance on QALYs, instead using methods that intentionally allow for consideration of patient differences.
- Retrospectively review previous value assessments with an overlay of real-world evidence and consideration of factors impacting health equity.
- Increase transparency of methods.
Recommended Focus for HTA Organizations and Others Seeking Meaningful Engagement from Diverse Stakeholders in the Patient and Disability Communities
- Consider models from PCORI and participatory researchers to develop protocols for engagement that make equity and inclusion a high priority.
- Value engagement by providing engaged patient and disability partners with resources to participate effectively.
- Evaluate and improve engagement practices to correct any systemic disadvantages to engaged partners, clearly stating how affected patient and disability stakeholders were engaged in published HTA.
When the benefit designs that drive coverage and the clinical guidelines that drive provider decisions are built on biased HTA that relies on flawed science, incomplete data, and discriminatory algorithms, health inequities are a natural consequence. If HTA organizations and others want to do their part to address the cycle that perpetuates health disparities for certain subpopulations, data limitations must be addressed alongside improved methods capable of eliminating bias and recognizing social and structural determinants of health.