Sustain Authentic Patient-Centricity*

IVI consistently establishes diverse patient partnerships in governance, priority setting, and the creation of economic models and healthcare research. Value assessors should lead inclusive, robust research in patient preferences and data improvement to ensure HTA is authentic and relevant to patient experiences.

I am proud to be part of the Innovation and Value Initiative’s Patient Advisory Council and always come away from these discussions with new inspiration. IVI takes my input as a patient seriously, and it’s a great opportunity to contribute to the work of the organization and share recommendations with my colleagues.

Since the organization’s inception, IVI has prioritized authentic patient-centricity as a central tenet to its mission: to advance the science, practice, and use of patient-centered health technology assessment (HTA) to support decisions that make healthcare more meaningful and equitable. IVI established early leadership in engaging patient partners in governance and research collaboration through its Patient Advisory Council. In 2021, IVI published its Principles for Value Assessment in the U.S. to articulate how we put into practice the mission and goals of the organization. Our work continues to emphasize that HTA must sustain authentic patient-centricity.

IVI has identified four strategies to help put this principle into practice:

  1. Patients and caregiver partners co-lead the governance and strategic vision of the organization. We welcome new and diverse voices in our work.
  2. Lived experience and principles of health equity inform and have equal weight in all research, convenings, and thought leadership.
  3. The organization will commit resources and support to ensure that patients and caregivers are full partners in all research and organizational initiatives.
  4. The organization will evaluate the impacts of patient/caregiver partnership on the organization and on research findings and adjust our approach accordingly.

For each of these strategies, IVI – in partnership with its Patient Advisory Council, Board of Directors, and patient collaborators – has developed a checklist to evaluate both the quality and impact our partnerships with patient advocates and caregivers in our organizational practices, research projects, and engagement activities.

By holding ourselves accountable to our principles and implementing concrete tools to improve our approach, we hope to learn from and collaborate with people with lived experience to ensure that our research, engagements, and organizational structure stay true to our principles of patient-centricity and set a benchmark for the VA/HTA field on principles and authentic practice of patient engagement.

Click below to view the IVI Patient Partnership/Co-Leadership Checklist.

Awo Osei-Anto, H. and R. Puerini (November 2022). The Current Landscape of the Science of Patient Input. The Milken Institute/FasterCures. Available: file:///Users/ericamalik/Documents/IVI/patient%20engagementmaterials/Current_Landscape_Patient_Input_Milken_Institute_0.pdf

Bright, J. and A. Balch (March 1, 2022). Health Care Value Through the Lens Of Patients’ Well-Being. Available: https://www.healthaffairs.org/do/10.1377/forefront.20220228.656900 (final piece in 11-part series). Health Affairs Forefront Blog.

Bright, J. Patient Value Is the Root of a Learning Health System. Am J Accountable Care. 2021;9(4):34-36. https://doi.org/10.37765/ajac.2021.88805

Courtnay, C., Phillips, L., Masco, R., O’Hara Levi, S., Bright, J., Eller, J., Hyde, A., Kelly, M. and E. Malik (October 2021). “First-Hand Perspectives in Rheumatoid Arthritis: Insights to Improve Healthcare Research & Value Assessment.” Produced by the Innovation and Value Initiative. Available: https://www.thevalueinitiative.org/wp-content/uploads/2021/10/First-Hand-Perspectives-in-Rheumatoid-Arthritis_FINAL.pdf

Courtnay, S. (December 2021). In Evaluating Rheumatoid Arthritis Treatments, Involving Patients Is Key. AJMC.

Husereau D, Drummond M, Augustovski F, et al. Consolidated Health Economic Evaluation Reporting Standards 2022 (CHEERS 2022) Explanation and Elaboration: A Report of the ISPOR CHEERS II Good Practices Task Force. Value in Health. 2022;25(1):10-31.

Innovation and Value Initiative Methods Summit: Designing Equitable Measures and Methods for Patient Priorities in Healthcare Value Assessment Proceedings Report (Methods 2022). Produced by the Innovation and Value Initiative. Available: https://www.thevalueinitiative.org/wp-content/uploads/2022/03/2021-Methods-Summit-Report_FINAL.pdf

Linthicum, Mark et al (August 2022). Finding Equity in Value Racial and Health Equity Implications of U.S. HTA Processes. The Innovation and Value Initiative.

Linthicum MT, dosReis S, Slejko JF, Mattingly TJ, Bright JL. “The Importance of Collaboration in Pursuit of Patient-Centered Value Assessment.” The Patient. August 28, 2020:1-4. Available: https://link.springer.com/article/10.1007/s40271-020-00446-3

National Health Council. The National Health Council Rubric to Capture the Patient Voice: A Guide to Incorporating the Patient Voice into the Health Ecosystem. June 2019. Washington, DC. Available from: https://www.nationalhealthcouncil.org/Patient-Engagement-Rubric

Principles for Value Assessment in the United States (2021). The Innovation and Value Initiative. Available: https://www.thevalueinitiative.org/wp-content/uploads/2021/01/2021-IVI-Principles-of-VA_FINAL.pdf

Xie RZ, Malik E deFur, Linthicum MT, Bright JL. “Putting Stakeholder Engagement at the Center of Health Economic Modeling for Health Technology Assessment in the United States.” Pharmacoeconomics. 2021;39(6):631-638. Available: https://link.springer.com/article/10.1007/s40273-021-01036-3

Click below for a list of key terms.

Learn More

Interested in learning more? Please contact us at info@thevalueinitiative.org, or consider becoming a member of our organization. By joining IVI, you can ensure you are part of modernizing value assessment.

* Throughout our body of work, IVI uses the term “patients” and “caregivers” to refer to people who have health conditions or serious diseases or have cared for people who have experienced serious health conditions. We do not suggest that these individuals are their conditions. We intend to use this term with respect for individuals who have significant encounters with the healthcare system and the expertise and knowledge they bring to our common efforts to improve research and the healthcare system.