What to Ask Depends on Who You Ask: Measuring the Impact of Patient Engagement

Roslyn Schneider
Global Patient Affairs Lead, Pfizer
Ellen Coleman
President and CEO, MK&A
Mary Murray
Associate Director, Diversity and Patient Engagement in Clinical Operations, Bristol-Myers Squibb
Suzanne Schrandt
Director, Patient Engagement, Arthritis Foundation

his Global Annual Meeting session attracted attendees from industry (68 percent), the patient community (21 percent), academia (5 percent), and health authorities/government (5 percent). Beginning with a poll of all attendees, the session revealed diverse views of what people mean by patient engagement and the related outcomes or metrics people are seeking. Among the most frequent keywords were time, enrollment, patient, satisfaction, retention, burden, and clarity.

In this session, stakeholders discussed their perspectives on the outcomes they expect from patient engagement and what types of measures can effectively capture achievement. A case study evaluating the impact of a patient engagement effort from the dual perspectives of patient satisfaction and clinical development was also examined.

Key Takeaways

• The recently released Patient Engagement Quality Guidance from Patient Focused Medicines Development helps stakeholders plan, develop, and assess the quality of patient engagement activities throughout the development and lifecycle of medicines.
• A case study conducted by MK&A and Grünenthal put forward a set of suggested company and patients metrics (detailed below) that measure the impact of patient engagement.
• Other incentive could include integrating gratitude via a quality framework or adjusting structures, roles, and processes in an organization to improve technical and/or interpersonal excellence.
• Major challenges remain in evaluating the impact of patients that are engaged as partners and advisors.

It was noted that several coalitions are developing metrics for use by a variety of stakeholders, such as Patient Focused Medicines Development (PFMD), an open, independent global coalition of health stakeholders that recently released a Patient Engagement Quality Guidance. The pharmaceutical company Grünenthal is collaborating with patients to publish a white paper with recommendations on changes in pain measurement from the patient perspective. And a case study conducted by MK&A and Grünenthal demonstrates how industry and patients can work together toward a systems change and build metrics that are meaningful to each constituency. Examples include:

Company Metrics Measuring Impact

• Number of survey respondents
• Number of recommendations implemented within a three-year span
• Engagement with FDA to discuss changing standard measures
• Development of new measures based on patient input

Patient Metrics

• Level of hope conveyed to the patient community based on the project
• Number of caregiver responses
• Number of underserved patients reached
• Increased inclusion of functional goals as a measure over severity

Major challenges remain in evaluating the impact of patients that are engaged as partners and advisors in the ideation of new medicines, articulation of key treatment goals, and construction of patient-centered trials. Recognizing these challenges clearly shows that we have moved from simply counting the “presence” or “absence” of engagement, to the need to establish when and how engagement is most meaningful.

The pivotal change will be to no longer simply invite patient partners to “tell their story.” Rather, patient partners should be sitting at the table with equal footing to their research and development counterparts, providing insights from their unique perspectives throughout the entire process — from meetings and projects to multi-year relationships. Simply put, patients should not be the “entertainment,” but an equal partner in the process.