It’s Time for Patients to Drive Healthcare Research

When the new CHEERS report was released, we were pleased to see the updated standards regarding patient and stakeholder engagement. These standards reflect a growing recognition that patient and stakeholder engagement need to be incorporated into economic evaluations and healthcare research from the conceptualization stage rather than as an add-on after the project is completed. The two new standards are:

  • Describe any approaches to engage patients or service recipients, the general public, communities, or stakeholders (such as clinicians or payers) in the design of the study.
  • Report on any difference patient/service recipient, general public, community, or stakeholder involvement made to the approach or findings of the study[1]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 … Continue reading

These new standards directly align with IVI’s mission and practice. In fact, the CHEERS report specifically cites an IVI publication exploring best practices in stakeholder engagement.[2]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 … Continue reading

In working with our Patient Advisory Council (PAC) and other patient partners, we aim to include people with lived experience in all our research initiatives – from the outset. Prior to starting the development of our current economic model on major depressive disorder (MDD), for example, we convened a multi-stakeholder advisory group to provide perspectives and recommendations on how to approach this important topic. Already, this process has helped focus our target population for people with major depressive disorder rather than treatment resistant depression, and reinforced the importance of including demographic measures within the model.[3]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 … Continue reading Building on that foundation, IVI recently completed a second public comment period on the draft MDD protocol and were pleased to receive constructive feedback from a broad sector of stakeholders – patients, payers, researchers, and industry. Throughout the development of the MDD model, we are committed to sharing our learnings along the way with a special focus on how these engagement efforts will impact our final model.

Another real-world example of our principles in action is IVI’s recent report, First-Hand Perspectives in Rheumatoid Arthritis (RA): Insights to Improve Healthcare Research & Value Assessment. This work was co-authored with four individuals living with RA, as well as representatives of the Arthritis Foundation.[4]Courtnay, C., Philips, L., Masco, R., O’Hara Levi, S., Bright, J., Eller, J., Hyde, A., Kelly, M. and E. Malik. “First-Hand Perspectives in Rheumatoid Arthritis: Insights to Improve … Continue reading This report, and the subsequent commentary by one of our co-authors, highlights that even with all the research on RA, we have failed to ask the questions that matter most to patients. Direct medical costs are the only starting point, and until we consider the mental health burden, caregiver costs, and the indirect costs of living with RA, we will continue to miss in our research.[5]Courtnay, C. “In Evaluating Rheumatoid Arthritis Treatments, Involving Patients is Key. American Journal of Managed Care (online). December 2021. Available: … Continue reading

IVI’s work continues to demonstrate how to put such concepts into practice – through our co-creation of research and models that reflect real patient inputs – accelerates learning and adoption. This work is at the heart of IVI’s mission: to ensure that patients are at the center of value assessment not just in theory, but also in practice.

Author: Jennifer Bright, MPA, Chief Executive Officer, Innovation and Value Initiative

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The Innovation and Value Initiative is a 501(c)(3) nonprofit research organization committed to advancing the science, practice, and use of value assessment in healthcare through collaboration among thought leaders in academia, patient organizations, payers, life science firms, providers, delivery systems and other organizations.

If you enjoy reading our blog posts and interested in learning more about IVI or becoming a member, please contact Erica Malik at erica.malik@thevalueinitiative.org. You can also find information on our membership page here.

References

References
↑1 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.
↑2, ↑3 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.
↑4 Courtnay, C., Philips, L., Masco, R., O’Hara Levi, S., Bright, J., Eller, J., Hyde, A., Kelly, M. and E. Malik. “First-Hand Perspectives in Rheumatoid Arthritis: Insights to Improve Healthcare Research & Value Assessment.” 2021. Produced by the Innovation and Value Initiative.
↑5 Courtnay, C. “In Evaluating Rheumatoid Arthritis Treatments, Involving Patients is Key. American Journal of Managed Care (online). December 2021. Available: https://www.ajmc.com/view/in-evaluating-rheumatoid-arthritis-treatments-involving-patients-is-key