Project Summary

Background: The COVID-19 pandemic has highlighted and exacerbated existing disparities in health care. Understanding all the factors that impact healthcare access, utilization, health disparities, and health outcomes is critical to informing strategies used to address healthcare cost. This includes defining appropriate burdens and economic impact to patients and caregivers. The long-term implications of shifts in the workforce are still unknown. However, one clear impact is a heightened awareness of the importance of ability to work, productivity of the workforce, and lack of clear measures of the economic impacts of health and healthcare.

Proposed Solution to the Problem: Innovation and Value initiative (IVI) aims to convene stakeholders in a series of solution-oriented dialogues that define recommendations for applying patient data on the full range of economic impacts into research on comparative effectiveness and patient-centered value. The proposed project seeks to address gaps in data that should be prioritized in research, create a shared understanding of the rigor and standards used when conducting research that considers the full range of economic outcomes data, and explore solutions to common barriers that often prevent the implementation of promising approaches in the collection of patient-centered economic impact measures from fully and successfully occurring in comparative clinical effectiveness research and value assessment (CER/VA).


  1. Identify the decision contexts into which data on the full range of patient economic impacts may be needed
  2. Engage key decision makers to provide input on the data domains, data collection, and analytic methods required to achieve next level data-driven decision making that is centered on what matters most to patients and their caregivers
  3. Identify the barriers that hinder adoption in research and value assessment practice for analyzing health outcomes data alongside data on the full range of patient economic impacts
  4. Design a framework that offers recommendations to inform research priorities and clarifies the conditions required for the adoption of patient-centered outcomes, including economic impacts and burdens, in CER/VA

Activities: IVI will convene a Steering Committee to inform the design and representative participation in the convening series. Steering committee members will include patients, payers, manufacturers, and research partners. 

To inform recommendations, IVI will conduct key informant interviews with leaders representing health service researchers and healthcare decision makers to gather input on decision contexts and specific needs for data on patient impacts. Based on findings, IVI will draft the framework structure and elements for further refinement. To gather input, IVI will host two roundtables to inform development of recommendations and contribute to the framework. 

A final consensus meeting will produce final recommendations on patient-centered impacts that represent priorities for incorporating into patient-centered outcomes research (PCOR)/CER as well as a capacity-building research agenda to inform translation of promising approaches into research and healthcare decision making. IVI will produce and disseminate recommendations that benefit PCORI’s research agenda planning, PCOR, and real-world data development.

Projected Outcomes and Outputs: Through engagement with stakeholders, IVI will explore barriers to consensus on what patient impacts should be a priority in research and value assessment as stakeholders undertake efforts to incorporate patient perspectives. In addition, the project will offer a forum for identification of emerging promising approaches across disciplines in collecting and utilizing patient perspectives as part of PCOR and VA. This focus will guide stakeholders in discussion on what data on patient impacts are fit for purpose for different decision contexts, with a feasibility and usability lens; explore opportunities and methods for real-world data generation; and explore the core competencies that will facilitate these data generation activities.  

The proposed engagement activities are designed to inform a framework that: 

  • Clarifies the purposes, or key decision contexts, for which patient-centered economic impact data are collected and could be applied 
  • Identifies promising approaches and actions needed to adopt the use of patient-centered economic impact data in real-world decision-making 
  • Offers insights on roles for different stakeholders to take to ensure sustained action 

The Framework developed will include recommendations to inform research priorities and policies for PCORI and other research sponsors. Recommendations on alignment of data collection standards, strategies to advance rigor of patient-centered data, and promising approaches on implementation in CER/VA can guide efforts to build a meaningful ecosystem of patient-centered economic impact data and stakeholder education about the importance of collecting and incorporating such data into research and value assessment. 

Short-term outcomes during the project period include increased engagement of stakeholders in informing priorities around how to represent the full range of patient-centered economic impacts in comparative effectiveness research and value assessment. 

The proposed project aims to build buy-in from the PCOR/CER and value assessment community and offer recommendations to envision data collection methods and analytic methods that reflect the full range of economic impacts on patients. This project supports understanding of barriers and what is needed to advance incorporation of patient-centered measures into research.

In the medium-term (0-2 years post-project period), the project seeks to inform the research priorities of PCORI related to a broader understanding of impacts to patients and other stakeholders. This could inform identification of promising approaches that could be spread across sponsored research projects. In addition, IVI seeks to spark dialogue between the PCOR/CER research community and the payer community to match inputs with the decision contexts that will have impact. Through dialogue, issues such as rigor, standards, and focus of research questions can be addressed in a collaborative manner.

Long-term outcomes (3+ years post-project period) include the Framework Report proposed through the project, which is intended to inform capacity-building initiatives that will prepare the workforce to collect and use patient-centered data as part of PCOR/CER and VA practice. In addition, the project may inform efforts to align incentives in health care and the policy changes that are needed to reorient the health care system to what matters most to patients and build a value-based care approach that utilizes patient-centered inputs to drive decision-making. Is it also likely to yield a set of benchmarks to measure methods for the purposes of evaluating future research proposals.

Patient and Stakeholder Engagement Plan: IVI is firmly committed to partnering with patients, especially as co-designers and key informants, from the start. IVI will partner with patients in planning and executing the proposed project. To ensure diverse stakeholders are represented in the key informant interviews and in the roundtables, IVI will consult patient leaders within its membership and committees. Patients will inform design of the framework and recommendations. Special attention will be given to ensure representativeness of patient leadership that reflects organizational/individual voices, elevate underrepresented communities, and expand the community of patient leaders involved. All patient partners will receive compensation to recognize their contribution and facilitate their capacity to engage in this work.

Project Collaborators: IVI is partnering with AcademyHealth, who will serve as expert consultants on the project. In addition, IVI collaborates closely with the National Health Council on patient and stakeholder engagement convenings, including the proposed project. In addition, Network for Excellence in Health Innovation has agreed to serve on the Steering Committee and inform project implementation.

Project Information

Jennifer Bright, MPA
Innovation and Value Initiative (IVI) Foundation

Key Dates

May 2023


Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: April 3, 2024