Consumer spotlight: Celebrating advancements in consumer engagement and paving the way forward

Evelyne Kane, Sr. Program Manager, Community Engagement & Capacity Building

Community & consumer engagement

Since we launched our consumer voices bureau Amplify in October 2020, much has changed in the national landscape of consumer engagement work, and much hasn’t. Over the last two years, the complex care field has seen a growing interest in consumer and community engagement, as well as a growing appreciation for the value of this work. Increasingly, organizations are bought into the “whys” of consumer engagement. We understand the reasons for bringing people with lived experience (PWLE) to the table and are creating opportunities for engagement and partnership work that go beyond story sharing. 

However, there is much more work to be done to ensure that organizations can operationalize and sustain partnerships with complex care consumers and PWLE that are truly impactful, equitable, and mutually beneficial. This includes supporting organizations in adopting practices, processes, and workflows that support meaningful consumer partnerships, as well as creating the policy and financial structures that are necessary to incentive, sustain, and broaden adoption of this vital work. 

In a time of great financial, staffing, and operational challenges, how can complex care organizations dedicate the time and resources necessary for consumer engagement work? As more organizations seek to engage with people with lived experiences, how can we ensure these partnerships go beyond “checking the box” and lend themselves to impactful and equitable partnerships — and how can we understand and measure the impact of these partnerships?  

And, in a country where access to healthcare and basic needs like housing remain a privilege and not a right, how can we ensure that people living with complex medical and social needs have access to the care and resources they need in order to take their seat at our collective table? 

The way forward for consumer engagement work will require that commitment from leaders in complex care goes beyond words and into action. It will require changes in policy and in practice. It will require ongoing partnership work between complex care organizations and PWLE to envision what the future of complex care can and should look like, and how this vision can become a reality. Just like building trust, many of these changes will require time and sustained effort. And while the road ahead may be long, it will not be lonely if we commit to going together.

Amplify highlights from 2022:

“The level of expertise and depth of knowledge/perspective our subject matter experts brought to our projects was unmatched. We are very grateful to have connected with these participants and look forward to collaborating in the future with Amplify.” 

-Amplify client, 2022 

Public health emergency flexibilities roadmap for policymakers 

LaRae Cantley participated as a lived experience expert on the COVID-19 Public Health Emergency (PHE) Flexibilities Working Group, convened by the Alliance for Health Policy and supported by the SCAN Foundation. The Working Group contributed to the release of a roadmap for policymakers entitled “Leveraging COVID-19 public health emergency flexibilities to advance person centered care for older adults and people with complex care needs”  which discusses and makes recommendations about the future of 21 selected public health emergency flexibilities that best advance person-centered and equitable care.  

Among other contributions, LaRae provided insight on both the importance of considering policy implications through the lens of lived experience, as well as how to build inclusive and equitable spaces to support diverse groups of stakeholders, including individuals with lived experiences, to come together. 

Partnership to Align Social Care 

Aracelis Quinones, Stephanie Burdick, and LaKeesha Dumas provided feedback and recommendations to support the work of the Partnership to Align Social Care’s Community Care Hubs (CCH) Working Group. The goal of the Community Care Hub model is to organize community-based organizations into local/regional networks that provide centralized infrastructure for contracting with healthcare entities on a more equal playing field.  

Aracelis, Stephanie, and LaKeesha’s recommendations focused on:  

  • the importance of considering the value proposition of this work from the perspective of consumers and community residents,  
  • how to ensure meaningful participation of consumers and people with lived experience in CCH governance,  
  • understanding community experiences of privacy and data sharing considerations,  
  • considering how CCH practices and structures can best support equitable participation of and provide benefit to community-led organizations. 
Advancing health equity: Leading care, payment, and systems transformation 

Dennis Heaphy, Naomi Williams, and LaKeesha Dumas were selected to serve as National Advisory Committee members for the “Advancing health equity: leading care, payment, and systems transformation” program (AHE). Supported by the Robert Wood Johnson Foundation and led by University of Chicago’s School of Medicine and Biological Sciences, AHE includes a learning collaborative that works with teams of state Medicaid agencies, Medicaid health plans, and frontline healthcare delivery organizations. The aim of the learning collaborative is to develop and implement payment reform that supports and incentivizes care transformation aligned with advancing health equity.  

In their role as NAC members, Dennis, Naomi, and LaKeesha have been able to provide guidance on inclusive language, consideration of the implications on intersectionality, and recommendations for how the initiative can support and encourage the involvement of people with lived experience on each learning collaborative team. Denni, Naomi, and LaKeesha will continue their role on the NAC through the end of 2024. 

Building capacity for diversity, equity, and inclusion in children’s hospital PFACs

Mia Matthews was selected to serve on The National Project Advisory Committee for the Institute for Patient and Family Centered Care (IPFCC) and Cincinnati Children’s Hospital Medical Center’s project titled “Building capacity for diversity, equity, and inclusion in children’s hospital patient/family advisory committees (PFACs).” This project builds on a national study of children’s hospital PFACs that IPFCC conducted. One finding from the study was that DEI remains a significant challenge for children’s hospitals, and that patients and families are not frequently involved in DEI efforts.  

Mia’s contributions to the Advisory Committee draw from her experience as the mother of a child with complex needs as well as her extensive work as a member of Johns Hopkins Children’s Center Pediatric Family Advisory Council and the Mount Washington Pediatric Hospital Family Advisory Council.

Catalyzing policy innovation in Medicaid 

Lauren Pelley was selected to take part in a convening organized by the Center for Healthcare Strategies (CHCS) to inform CHCS’ efforts to more effectively address the behavioral health needs of people served by Medicaid, with a focus on health equity.  

Lauren opened the meeting by sharing a story, “In my first year as a Recovery Support Practitioner there was a lot of learning, or rather unlearning… I knew quite a bit about what the mental health recovery journey had looked like for me, though I had a bit of unlearning to do about what that could look like for others. It’s not always recovery for some, but discovery. The word ‘recovery’ means to return to a normal state of mind or health. ‘Discovery’, on the other hand, means to uncover… for some people, it’s not about finding what was once lost, but discovering all that is there but is yet to be found.” In addition to sharing this story, Lauren also contributed throughout the meeting’s discussions, drawing from their experience as a Certified Recovery Support Practitioner as well as a person with lived experience of neurodiversity and mental health recovery. 

At the Core of Care podcast 

Sara Reid was featured in an episode of the At the Core of Care podcast, called “Reframing trauma informed care as a systems approach”. In this episode, Sara and Kathleen Metzker, Director of Integrative Health and Mind Body Services at the Stephen and Sandra Sheller 11th Street Family Health Services of Drexel University, are interviewed by Jillian Bird, Director of Training and Technical Assistance at the National Nurse-Led Care Consortium. Sara, Kathleen, and Jillian discuss centering trauma literacy in the health center medical home.  

Sara speaks about the challenges she has faced in her own life as a trans woman receiving healthcare, as well as the work she has done to improve care and service delivery for her community as a health educator and member of Boston Healthcare for the Homeless’ Advisory Board. Sara shares many lessons about how to create safe and supportive spaces for people who have experienced trauma, including this: “Just those three words: ‘I believe you.’ It means so much.” 

Looking to connect with people with lived experience of complex care to inform your next program, project, or publication? Reach out to Amplify:

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