Advancing Patient-Centered Healthcare
Through Research and Education
What if healthcare decisions were based on the outcomes patients actually prioritize?
Everyone needs healthcare, yet patients often have surprisingly little control over the decisions that affect them most. The Patient Benefit Initiative aims to amplify patient voices in healthcare decision-making by promoting validated, transparent processes for communicating what matters most to patients.
Our Mission
The Patient Benefit Initiative aims to advance understanding of patient benefit through research and education, developing a validated, transparent framework for identifying what matters most to patients that could inform healthcare policies and practices across the United States. By doing so, the Initiative strives to optimize patient outcomes, reduce inefficiencies, and promote policies and healthcare that aligns with patient priorities.
The Patient Benefit Initiative is a research and educational learning collaborative. All activities constitute legitimate research, education, and knowledge dissemination consistent with advancing understanding of patient-centered healthcare measurement and policy considerations. The Initiative does not engage in lobbying, advocacy for specific legislation, or attempts to influence specific regulatory decisions.
- Research & Empirical Assessment of Measurement Protocols
Evaluate existing outcome measurement sets (like ICHOM) leveraging our comprehensive process for defining ‘patient benefit’ to assess how patient preference data could support implementation and prioritization. ICHOM outcome sets are valuable as established measurement frameworks. - Analyze Policy Context & Implementation Considerations
Pinpoint reforms in reimbursement, coverage, pricing, and quality frameworks where patient benefit measures can be effectively integrated. - Facilitate Multi-Stakeholder Learning & Knowledge Exchange
Establish expert working groups, host convenings, and conduct workshops to educate, evaluate, and develop policy recommendations—featuring patient representatives as key advisors. These convenings will include various stakeholder groups such as clinicians, hospitals, payers, regulators, and industry. - Generate Empirical Evidence & Policy Frameworks
Produce evidence demonstrating how the implementation of patient benefit measures improves care and outcomes, along with detailed policy proposals for integrating these measures into healthcare policy decision-making processes.
- Learning Collaboratives:
Convene educational sessions across stakeholder domains (patient advocates, healthcare providers, payers, life sciences companies) to:
- Conduct empirical assessments applying patient benefit framework to existing outcome measurement sets in collaboration with ICHOM.
- Facilitate knowledge exchange about implementation considerations in clinical, regulatory, and payment contexts.
- Develop educational resources and policy analysis papers examining how patient benefit concepts could inform physician payment, drug price negotiations, coverage decisions, and other healthcare policies.
- Research Partnership Projects:
Conduct empirical feasibility assessments of ICHOM Diabetes and Obesity core outcome sets (including Diabetes and Obesity), evaluating how patient preference data could support implementation and adoption across healthcare settings.
- Policy Research & Analysis:
Examine the healthcare policy landscape and provide educational resources to help stakeholders understand considerations for including patient benefit in decision-making processes.
- Research & Education:
Conduct ongoing research and educational activities to inform understanding of how patient benefit considerations could be integrated into healthcare policymaking, ensuring greater system-wide focus on outcomes that truly matter to patients.