Background: Inclusion of diverse inputs and perspectives from a representative patient population is essential to ensure that the research enterprise—from clinical and comparative effectiveness to outcomes and value assessment—captures the diversity of patient preferences and treatment experiences in the real world, and yields credible and relevant insights to inform decisions. Patient perspectives on value may differ from that of medical providers or other decision makers. Standardized measures and methods for collecting and scaling inputs on patient preference in real-world settings are lacking.
Proposed Solution to the Problem: IVIF will convene a multi-stakeholder summit series to derive consensus on patient inputs that more fully represent impacts on patients of their health conditions and health care. Through this summit, IVIF and its partners will engage patient leaders and stakeholders across the healthcare landscape to prioritize the methods for collection of relevant data that better represents what matters to patients.
Objectives: The primary goal is to convene and facilitate discussions among patients and other stakeholders—including researchers, providers, and payers—to build consensus on how to define, collect, and use data that more fully represent the impacts on patients of disease and treatment options. Specific project objectives include:
- Evaluate current research that informs the conceptualization, collection, and use of patient-derived data on patient preferences, outcomes, and impacts
- Prioritize and standardize target elements of patient inputs relevant to specific decision contexts
- Prioritize methods research and other action needed to address gaps in the collection and use of data on patient inputs as part of patient-centered outcomes research (PCOR), comparative clinical effectiveness research (CER), and value assessment
- Define and empower best practice in the collection and use of patient inputs data on a large scale
- Establish a multi-stakeholder advisory committee to inform planning for the convening
- Host a three-part virtual summit that brings together national leaders for discussion and consensus building on how to represent the impacts to patients in PCOR/CER research and value assessment
- Share results of the convening with stakeholders through a proceedings report and other dissemination activities
Projected Outcomes and Outputs: The outcomes of the convening include answers to the question: How do we define value in a patient-centered approach that reflects the full range of outcomes as well as patient preferences? This will inform PCOR/CER by exploring patient outcomes, beyond traditional clinical ones, that represent important impacts to patients. It will also help define and prioritize a research agenda focused on advancing the use of such data in PCOR/CER, as well as in value assessment.
Outputs of the project include: Summit agenda, presentations on current state of the field, session evaluation reports, convening proceedings report, and commentaries or white papers that disseminate convening outcomes.
Patient and Stakeholder Engagement Plan: IVIF will partner with patient representatives in planning and executing the proposed project. The first step is to ensure that a broad spectrum of stakeholders is represented to inform project planning. The advisory committee will guide the agenda and outreach plan for the meeting. Patients will be represented on the committee alongside researchers and health system partners. A principal role of the advisory committee is to act as a conduit of information and to identify patients and other stakeholders that can best represent the perspectives sought for this dialogue.
Project Collaborators: National Health Council, EveryLife Foundation for Rare Diseases, health systems, healthcare providers, patients, and researchers.