The organization clearly understands and documents how PWLE have meaningfully contributed to the work and how their involvement has made an impact.
- To what extent can we identify specific changes that were made in organizational policies, practices, and service delivery approaches as a result of engaging PWLE?
- How do we document and track how input and feedback from PWLE directly informs meaningful changes?
- How has engaging PWLE improved outcomes for the organization, for the health and wellbeing of our community, and for the PWLE we work with?
- Establish clear pathways from insight to action. To understand how insights from PWLE meaningfully inform and contribute to change and improvement, organizations need clear processes that track the pathway from documenting insights to review, action by staff and leaders, and resulting impact.
- See: Establishing Feedback Loops that Support Action for guidance on creating these pathways
- Focus on contribution over causation. Because it can be hard to prove causation, focus instead on contribution to demonstrate how engagement informed or influenced change – even if other factors had an influence, too.
- Capture early signals of impact. Organizational outcome metrics are often “lagging indicators” meaning that it takes time to see the impact of PWLE engagement on these outcomes. Capture short-term “early signals” of impact, such as changes in program or service processes that improve access or patient/client experience and are likely to lead to bigger picture impact.
- Use qualitative stories alongside quantitative measures. For organizations just beginning to measure the impact of engaging with PWLE, start by documenting stories and anecdotes that illustrate how engagement led to meaningful change. Over time, link these narratives to quantitative quality, clinical, and operational metrics to further demonstrate impact.
- For instance, in the example from the Community Health Plan of Washington listed below, where input from PWLE informed the organization’s approach to incentivizing cancer screenings, screening rates could be reviewed before and after implementation. An increase could indicate that engagement with PWLE contributed to greater access, earlier detection, and even lives saved.
Laura Carroll, a person with lived experience, shares an example of how her involvement on an advisory board had a meaningful impact.
Outcome and impact metrics you can track include:
- Policy and practice change
- Number and significance of organizational decisions or organizational policies influenced by input from PWLE
- Number and significance of changes and improvements to service delivery work flows and practices informed by PWLE
- Organizational culture
- Degree of leadership involvement and support
- Creation of roles for PWLE roles (including advisors, board members, and workforce positions such as Community Health Workers)
- Reducing health disparities
- Expanded Increased reach and relevance of services for marginalized populations as a result of engaging PWLE
- Reduction in disparities in access, quality, or outcomes as a result of engaging PWLE
- Innovation and responsiveness
- Faster identification of gaps, risks, and opportunities as a result of engaging PWLE
- Improved alignment between services and community needs as a result of engaging PWLE
- Enhanced patient-reported experience and outcomes (e.g., CAHPS, NPS) as a result of engaging PWLE
Community Health Plan of Washington’s member advisory committee directly informed the development of a new incentive program focused on cancer screening, ensuring that the design and outreach for the program were empowering rather than relying on as opposed to taking a fear-provoking approach often used to encourage cancer screening.
Stanford Health Care patient-family advisors provided feedback that it was confusing to sign into multiple patient portals to access their health information. As a result, the organization began working to combine these into a single sign-on system to streamline the patient experience.
Pediatrics Northwest revised its missed appointment policy based on family feedback. The revised policy shifted from a punitive focus to one centered on supporting families and reducing barriers to care, improving the patient experience.
Community Care’s Member Advisory Board (MAB) provided feedback leading staff to simplify materials and use more infographics rather than wordy documents. Community Care even developed educational materials in the format of a comic book, “Journey to Hope,” to make mental health information more accessible to teens and young adults.