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As Value Assessment Evolves, the Patient Voice Must Not Be Forgotten

By: Eleanor M. Perfetto, PhD, and Elisabeth M. Oehrlein, PhD, National Health Council March 4, 2020

As researchers develop new approaches for value assessment, we must ensure the patient voice remains at the forefront.

Traditionally, assessments of value in health care have not incorporated the patient perspective. As a result, they may not capture the elements of value that truly matter to patients. These value elements, such as the impact of the disease and treatment on the family, a patient’s ability to engage socially and remain active in their community, and patient’s planning for the future, vary from patient to patient because each disease — like each person — is different.

In 2016, the National Health Council developed a Value Model Rubric  to guide the development of patient-centered value assessments as well as a Get-Ready Checklist for Patient Organizations to help patient advocacy organizations become more engaged in discussions of value. This spring, we’re making updates to both publications to ensure they continue to be relevant as the science and methods of patient-centered value assessment evolve.

To help spur innovation in value assessment methods, we’ve partnered with University of Maryland’s Patient-Driven Values in Healthcare Evaluation (PAVE) Center to explore the development patient-driven value elements and promote the inclusion of those elements in evaluations of treatments for chronic obstructive pulmonary disease (COPD). The PAVE Center is a PhRMA Foundation Center of Excellence.

Our role within the PAVE Center is to lead education initiatives. Last year we held two formal training sessions on value assessment. The first, “Back to School with the National Health Council: Patient Community Training on Value Assessment,” provided background information to patients and patient organizations about value assessment with emphasis on the patient voice. The second, “Value Assessment Frameworks,” was held at the BIO Patient and Health Advocacy Summit and included a general overview of value assessment. In addition to these workshops, the NHC and the PhRMA Foundation co-hosted a conference “The Next Generation of Value Assessment: Including the Patient Voice,” this past November to highlight the role of the patient in the evolving methods and data sources for value assessment.

We also recently added two new modules to our online course “In the Pursuit of Value: An Introduction to Health Economics and Value Assessment”:

  • Heterogeneity of Treatment Effect
  • Tools for Dealing with Uncertainty in Economic Analysis

This year, we will develop new training and tools on effectively communicating about value assessment.

As researchers develop new approaches for value assessment, we must ensure the patient voice remains at the forefront. And there’s only one way we can do that: by listening directly to patients.

You can read more about the National Health Council’s Value Assessment work in our Morning Consult editorial, here.

Eleanor M. Perfetto, PhD, MS is the Executive Vice President of Strategic Initiatives at the National Health Council. Elisabeth M. Oehrlein, PhD, MS is the Senior Director of Research and Programs at the National Health Council.