NHC Publishes White Paper on Overcoming Barriers to Amplify the Patient Voice in Value Assessment


By Dr. Elisabeth Oehrlein, Senior Director, Research & Programs

The National Health Council (NHC) published on Monday our latest white paper, A Dialogue on Patient-Centered Value Assessment: Overcoming Barriers to Amplify the Patient Voice, which outlines recommendations to enhance patient centricity in value assessment.

On July 31, 2018, the NHC convened representatives from US organizations that have produced value frameworks/assessments over the last several years with participants from patient groups that have interacted with those organizations. The objectives of the meeting were to articulate a shared vision for what marks success in enhanced patient centricity in value assessment (VA) and outline tangible, feasible actions that can be taken to achieve that success. The actions may be on the part of patient groups, value-assessment organizations (VA bodies), or both in collaboration.

“Bringing together the patient advocacy community and value assessors improves the quality of value assessments,” says Eleanor Perfetto, NHC’s Senior Vice President, Strategic Initiatives. “This interaction makes the process truly patient-centric.”

During the meeting, patient groups and VA bodies agreed that the ultimate goal of patient-centered VA is for patients to have access to treatments they need at prices they can afford. Patient-centered VA exists when patients have been engaged, heard, understood, and respected throughout the entire process, and their input is incorporated and guides decision-making. Participants developed 17 recommendations to enhance patient centricity in VA. Recommendations include examples of recommended actions for improving engagement and examples of recommended actions for collecting and leveraging patient-provided data.

The meeting concluded with participants reaffirming the importance of collaboration between patient groups and VA bodies moving forward. While they must partner to improve the patient centricity of VA, other stakeholder groups, such as employers and payers, are also critical and their participation should be part of future meetings.

These recommendations from patient advocates and value assessors were the next piece of the puzzle necessary to build on the NHC’s past work in its value initiative, including the Value Model Rubric, a tool to help evaluate the patient centeredness of value assessments and to guide VA developers on the meaningful incorporation of patient engagement throughout their processes, and the Get Ready Checklist, a step-by-step guide for patient advocacy organizations to engage in the development, implementation, and assessment of value frameworks. A dialogue with employers will be a next step. Findings and recommendations from this meeting will be used by the NHC to inform future value initiative priorities.

View the paper.