A conversation with Evelyne Kane

by Jon Scaccia July 29, 2024

Evelyne Kane is Associate Director of Community Engagement and Capacity Building at the world-renowned Camden Coalition.

In her role, Evelyne is dedicated to ensuring that individuals with lived experience are equal partners in enhancing systems and services for those navigating health and social complexities. She takes pride in collaborating with community leaders across the U.S. through the National Consumer Scholars program. Evelyne also supports partnerships between complex care organizations and individuals with lived experience through Amplify: A Consumer Voices Bureau. Additionally, she leads the co-design of a national strategy to advance community engagement through the INSPIRE project.

We recently talked with Evelyne about her work and the potential impacts for community engagement.

Can you describe the primary goals and objectives of the INSPIRE initiative and how they align with current public health priorities?

INSPIRE – which stands for Initiating National Strategies for Partnership, Inclusion, and Real Engagement – is a collaborative and coordinated team of organizations and people with lived experience committed to advancing the practice of authentic community engagement (CE) in the U.S. healthcare system.

The INSPIRE team came together in early 2023 with the hypothesis that healthcare was at an important moment of change as it relates to the practice of community engagement. Over the past several years, leaders in healthcare (as well as other sectors) have become increasingly bought into the why community engagement. They understood that CE was valuable and the “right thing to do”. However, despite this increased buy-in, there was – and still is – a very significant gap in if and how organizations can build and sustain equitable, impactful, and mutually-beneficial partnerships with people with lived experience in their communities. The purpose of INSPIRE is to bridge this gap between interest in CE and implementation.

Beginning in May 2023, the INSPIRE team engaged over 300 people from across the U.S. (including healthcare professionals and people with lived experience) in extensive research activities — including a field survey, key informant interviews, a series of listening sessions, and a literature analysis — in order to assess the current state of CE in the U.S. healthcare system and identify a set of recommendations for how healthcare organizations, funders, policy makers and people with lived experience can advance these efforts.

One of messages our team wants to get out, is that CE is a key strategy for addressing any priority in healthcare. When done well, CE can build trust, advance health equity, create cost-savings and efficiencies for healthcare organizations, and ultimately lead to healthy and thriving communities. Authentic CE provides extraordinary value in both its process and outcomes. Every public health effort is aided by undertaking authentic CE to ensure that we as professionals, practitioners, or policy makers have an accurate and complete understanding of the problem/need we are addressing and develop an approach that doesn’t just look good on paper, but will actually be effective.

What were some of the most significant findings from your research regarding the current state of community engagement (CE) in the U.S. healthcare system?

I encourage everyone to check out INSPIRE’s final report for a complete overview of the findings from our research work, but I’d love to highlight a couple of the findings that really hit home for me.

One of our major findings, simply put, is that our initial hypothesis was spot on. There is lots of interest across healthcare in CE – ranging from deep, genuine interest to what I might characterize as ‘lip service’ based on a sense of social desirability. However, there are many gaps and limitations when it comes to if and how organizations are able to operational meaningful approaches to partnering with people with lived experience. One of my earliest ‘ah-ha’ moments in this work is that we aren’t even on the same page about what community engagement is and is not. As we talked to healthcare professionals about CE, we found that people were often conflating CE with other – worthy, but very different – types of activities such as marketing, patient activation, and partnerships/coordination with other organizations.

I also found it interesting that as we spoke with healthcare professionals and people with lived experience in our research, there were many times that folks across these two groups would identify the same implementation challenge, but describe it in slightly different ways. For instance, both healthcare professionals and people with lived experience recognized a lack of diverse and equitable participation in CE initiatives – particularly from communities most impacted by structural racism and injustice and health disparities. However, healthcare professionals were more likely to talk about this gap in terms of people who are “difficult to engage” while people with lived experience were more likely to talk about it in terms of organizations not doing enough to remove barriers to engagement – ranging from failing to address community mistrust to limited outreach strategies, to not being thoughtful about logistics (like meeting time and location).

Lastly, I’ll highlight our finding that those undertaking authentic CE find much value in the work at an individual, organizational, and community level. In the report we discuss several dimensions of CE’s value, but I think one of my favorites is that we found that one common way healthcare professionals and people with lived experience find value in community engagement is through increased connectedness and well-being. For people with lived experience, involvement in community engagement includes socialization, network and relationship building, and feeling “plugged in” to work and issues impacting them, their families, and communities. For healthcare professionals, CE can provide an opportunity to focus on building relational and authentic connections with community members not restricted by the demands and time-constraints of clinical interactions.

The report mentions that healthcare organizations often view CE as partnerships with other organizations rather than with PWLE. How can this perspective shift to focus more on direct engagement with individuals?

One of the first steps to advancing CE in healthcare is to ensure we have a shared understanding of what CE is and is not. As I mentioned above, right now, folks in healthcare are using the term “community engagement” to refer to all sort of very different activities and endeavours.

Early in our work, INSPIRE crafted a definition of CE:

“Community engagement is the different ways in which healthcare organizations can reach out to, engage, and partner with people with lived experience, with the goal of working together to improve healthcare and achieve positive health outcomes.”

Our definition centers work with people with lived experience themselves, as opposed to work with other organizations. This distinction is intentional and important to our team’s belief that CE is truly about those with lived experience.

While healthcare organizations build partnerships with other health and social care organizations for many reasons ( e.g. service coordination, social-need referrals, and/or as a strategy for building connections with people in the community) these activities are not synonymous with individual-level community engagement that brings people with lived experience directly into communication and partnership with healthcare organizations.

Now, there is some important nuance to this because we recognize that one of the reasons healthcare organizations partner with community-based organizations (CBOs) is because they are seen as “boots on the ground” and closer to the needs, experiences, and culture of the communities they serve. While this certainly can be a useful and valid approach for healthcare organizations to begin to make connections into their community it’s important to keep a couple things in mind:

First, not all organizations are equally representative of the experiences, goals, wants, needs, and priorities of people who live within a community. Some organizations are authentically community-rooted and led by people with lived experience and others are not. Secondly, healthcare organizations need to be mindful that as they turn to CBOs to be bridges into the community, they are relying on the trust and relationships these organizations have built over years or even decades. It’s important to approach these partnerships with transparency, authenticity, and accountability to safeguard the reputation and relationships CBOs have built with their community.

In no way are we trying to discourage organizations from partnering or coordinating with one another, rather we are encouraging organizations to see CE as something distinct and equally valuable and to invest in it as a strategy for achieving their goals and priorities.

How does the INSPIRE framework address issues of diversity and inclusion within community engagement practices, especially for communities most impacted by structural racism and health disparities?

The INSPIRE team created a framework we call The nine dimensions of authentic community engagement where we unpack the question “what makes CE good (or not)?”. One of the nine dimensions is “Diverse and inclusive”. Notably, this is also one of the major implementation gaps uncovered in our research.

When we look broadly at who shows up to participate in CE initiatives, we know that this group is more likely to be white, more likely to have higher educational levels, and more likely to be in a high socio-economic status. So many of the tables we have built for CE are missing the voices and perspectives from the people and communities we most sorely need to hear from – those who are fairing the worst in our current system of care. And without a specific equity lens to engage those who have been marginalized, community engagement may unintentionally contribute to ways in which people are excluded or oppressed.

There are many practical approaches that healthcare organizations can adopt to improve diverse and inclusive participation in their CE. A starting point is to use data to understand the demographics of the communities we serve and compare this to the demographics of who participated in our CE to identify what gaps in representation exist. The next step is to understand and address what specifically is driving these gaps – it is a lack of trust, a lack of outreach, accessibility barriers (language, transportation), etc.

A common refrain in CE is to “meet people where they are” but I don’t think it’s always clear what specifically this means. My answer is- it can mean a lot of things – figuratively and literally. It can mean that rather than starting a new advisory group that meets at a healthcare building at 3pm on Wednesdays, we as professionals spend time figuring out what community groups already exist and reach out to get on their agendas. It can mean accepting that not everyone wants to fill out our online surveys, but might be willing to talk if a friendly person gave them a call. It can mean bolstering our workforce with CHWs and Peers who can help build bridges through shared lived experience.

CE is key strategy for advancing health equity but can only be effective in this when we ensure that our CE itself prioritizes equity. This forces us to grapple with (some times uncomfortable) questions like: Whose perspectives and expertise are valued and whose are not? Whose contributions are acted on and whose are not? Who is being compensated for their work and who is not?

Looking forward, what are the next steps for the INSPIRE initiative in Phase II, and how do you plan to build on the findings and recommendations from Phase I to further advance community engagement in healthcare?

In Phase II, INSPIRE is focused on implementing recommendations from Phase I by:

• Working together- and individually- to directly undertake activities in-line with our strategic roadmap
• Producing and disseminating resources and learnings to support other organizations and communities 
• Embracing the power of collective action, by aligning on and amplifying key messages, learnings, and calls-to-action for advancing CE

We see Phase II as a long-term and ongoing effort where both the INSPIRE Core Team and other stakeholders in the field are engaged in carrying out the priorities identified in our Phase I final report.

Our team has secured funding from the Robert Wood Johnson Foundation to support a project focused on building the infrastructure to support high-quality and impactful CE by developing and disseminating a collection of practice profiles that identify the underlying practices of successful CE case studies with a focus on implementation that leads to impact. We are actively exploring several other avenues to continue these efforts. We welcome folks to reach out if you would like to connect about the Phase I work or ways to collaborate moving forward. You can contact me at ekane@camdenhealth.org

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