OBJECTIVES

Globally, there is now consensus that patients should be engaged in all facets of health, from research to treatment development, care delivery, and policy. Nevertheless, there is still much to be done to optimize a patient-centered healthcare ecosystem. Patient perspectives routinely differ from those of other stakeholders, who may overlook treatment ability to assist patients in achieving personal goals. Thus, health-focused efforts must incorporate and emphasize the patient voice early and throughout the activity . To support advances in patient centricity, the National Health Council (NHC), with multi-stakeholder input, created the Patient Engagement Rubric to provide a tool achieving health-ecosystem patient centeredness and guidance on meaningful patient engagement throughout various stakeholder processes.

METHODS

The NHC held a multi-stakeholder, invitational roundtable in early 2019. Participants (N=15) discussed patient and advocacy experiences, reviewed existing engagement rubrics, and thematically grouped hallmark patient-centeredness characteristics. The guide builds on prior work by the NHC and others such as the Patient-Centered Outcomes Research Institute. Drafts were reviewed by participants and through a public comment period.

RESULTS

The Rubric outlines two complementary, direct and indirect, pathways for addressing seven domains of patient centeredness: Patient Partnership, Transparency, Representativeness, Diversity, Outcomes Patients Care About, Patient-Centered Data Sources and Methods, and Timeliness. Specific examples illustrate how meaningful patient engagement and general patient-centeredness can be operationalized. The guide addresses ambiguous topics and terms such as meaningful engagement, patient-provided information, etc. It also provides real-world vignettes on the application of these concepts in medical product development, healthcare delivery, policy making, and clinical-practice guideline development.

CONCLUSIONS

The Rubric is intended to assist all stakeholders, especially the patient community, in assessing the level of patient centeredness and engagement in a given health-related activity. The Rubric will be refined over time based upon feedback from patient, patient group, and other stakeholder-use experiences.