On July 31, 2018, the National Health Council (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.
Patient groups and VA bodies agreed, 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 seventeen recommendations to enhance patient centricity in VA. Recommendations include:
Examples of Recommended Actions for Improving Engagement
- Patient groups can develop a catalogue of data and other assets they have and provide this to VA bodies to help convey the role a patient group can play in value assessment.
- VA bodies can clearly define and effectively communicate opportunities regarding when and how patients can substantively contribute throughout an assessment, including during the scoping process.
- Patients and VA bodies can co-develop training to prepare patients to engage with VA bodies and VA bodies to engage with patients.
Examples of Recommended Actions for Collecting and Leveraging Patient-Provided Data
- Patient groups can engage VA bodies when the groups develop or update registries and/or surveys to ensure they include questions that provide data sought by VA bodies.
- VA bodies can articulate the data gaps in VA, which can assist patient organizations when developing standardized approaches to collecting and formatting needed data. Data needs can be communicated to relevant patient groups in advance of a VA (the earlier, the better).
- Following an appraisal, the VA body and patient groups can debrief about how data submitted by patient groups were/were not useful, and how data collection or presentation can be improved for future use.
- Learnings can be passed on to other organizations, for example through the NHC’s Value Work Group.
The Dialogue 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 dialogues. A dialogue with employers was recommended as a next step. Findings and recommendations from this Dialogue will be used by the NHC to inform future value initiative priorities.