Author: Rick Chapman, PhD, Chief Science Officer

In the context of value assessment, what does patient representativeness mean?

A new infographic from IVI, “Value assessment should serve diverse populations and the organizations that provide their care,” shows the wide-ranging breadth of factors that comprise patient representativeness.

IVI endeavors to fully integrate the patient experience into the value assessment process. That includes ensuring that a broad range of patients – including a sufficient number of patients – are represented when models are being developed.

Unfortunately, this has not been the status quo in value assessment. If we are to develop economic models that fully represent the concerns of patients, much work remains to be done.

An analogous issue is the longstanding lack of diversity in clinical trials and indeed most health services research: those enrolled do not accurately represent the broad spectrum of individuals – in terms of ethnicity, race, gender, age, and other characteristics – who experience the health conditions being studied.

Major advances are needed, not only in methods for patient-centered value analyses but also in building a patient-centered research environment.[1] This is the painstaking work IVI is undertaking.

To that end, I encourage you to join us for IVI’s 2nd Annual Methods Summit on Oct. 27 from 10:00 am to 2:00 pm ET. The purpose of the Summit is to identify the most important data inputs and processes to best represent patient preferences and outcomes, and to explore ways to harness this data effectively.

We are thrilled to welcome Dana Gelb Safran, ScD, President and CEO of the National Quality Forum, as our keynote speaker. Dr. Safran will offer her perspectives on the challenges in moving health care delivery and payment toward equity and patient-centricity, and the opportunities for impact in better defining patient priorities as inputs to quality measurement and payment transformation.

Among our discussions that day is a panel on “Taking the Next Leap: What Have We Learned and Where Can Including Patient Perspectives Have Impact?” As part of that panel, patient representatives will discuss real-world examples that show the complexity and impact of patient perspectives through the lens of individuals’ experiences with specific conditions.

The Summit is partially funded through a Eugene Washington PCORI Engagement Award (# EAIN-21156). More information is available here and registration here.

We look forward to including you in the conversation.

[1] Linthicum. M.T., dos Reis, S., Slejko, J.F. et al. The Importance of Collaboration in Pursuit of Patient-Centered Value Assessment. Patient 14, 381-384 (2021).