Background: Recently, value frameworks have become widely discussed in health care as tools that may improve decision making by all stakeholders, including patients, if resulting value assessments are developed with meaningful patient engagement, focused on outcomes important to patients. This is important to patients because the outcomes that matter to them may not be the ones considered based upon the comparative evidence chosen. Without inclusion of the patient voice, it is likely the results will only represent other stakeholders’ views of value and will not produce results meaningful to patients or that can aid their decision making. However, value assessment is very new to the patient-advocacy community and lack of familiarity, knowledge, and tools can be a barrier to meaningful engagement.

Proposed Solution: With leadership from the NHC Value Work Group, an existing introductory health economics and value assessment training program was modified through a collaboration between the NHC and the University of Maryland PATIENTS program. The project team will leverage this past work and collaboration to build upon the existing basic training to further improve the ability of the patient community to meaningfully engage with value assessment bodies and promote patient-centered value assessment. The NHC proposes to (a) ensure the introductory training is available to all in the patient community, including those serving minority and underserved populations, and (b) provide opportunities for gaining more advanced knowledge, as has been requested by patient groups that have experienced engagement in value assessment.

Objectives:

• Identify patient-driven needs for value assessment training content
• Based on the content needs identified, build an intermediate-level curriculum and adapt the current program for use by a broader range of patient groups based on the information gathered
• Implement the new training modules in 2018-2019 for intermediate-level training and for broader reach of the current introductory-level training

Activities: The NHC Work Group will guide the direction of the project’s four phases: needs assessment; curriculum revision/development; delivery; and evaluation. The work group will review all draft materials. The work group will meet regularly via teleconference.

Outcomes and Outputs: The patient community will have increased capacity to respond to the growing number of demands to engage on value, especially for new, costly treatments. In 2018-2019, the project team expects to train over 100 members of the patient community.

Patient and Stakeholder Engagement Plan: This project is the direct result of needs expressed by NHC patient advocacy group members. The existing basic training was developed with the guidance of NHC Value Work Group members and this proposal is prepared with their expressed needs in mind.

The NHC Value Work Group will continue to provide oversight for this work. In addition, the project team has recruited NHC member organizations that have not been part of the work group and non-NHC member organizations that represent minority and underserved populations to ensure their views are included. The team also will rely on its partnership with the UMB PATIENTS program as an infrastructure development grant to improve patient engagement in research, especially with regard to underrepresented populations.

Project Collaborators:

• NHC Value Work Group members
• University of Maryland Baltimore