All In Webinar: Community Engagement and Governance

By Susan Martinez, Program Associate, Data Across Sectors for Health

On August 20, All In hosted a showcase webinar featuring two former Data Across Sectors for Health CIC-START awardees: California-based Bay Area Health Justice Collective and Reinvent South Stockton Coalition, who have successfully demonstrated incorporating community governance structure into their data-sharing work. The webinar was moderated by Bilal Taylor, Senior Program and Policy Analyst with the Nemours Children’s Health System

As organizations begin or continue to grapple with how to incorporate an equity lens into their work, most start with figuring out how to involve or engage their home communities. To start to unpack what we mean by “community engagement,” here are two of the top definitions of “engage” as referenced on Dictionary.com:

  • to occupy the attention or efforts of (a person or persons)
  • to attract and hold fast

For a long time, community engagement signified a call to, at the minimum, involve or inform community residents about an action or decision being done without their input. However, health disparities persist and adversely impact the residents we are “engaging”. For data-sharing initiatives in particular, fine-tuning your engagement process and allowing for a community governance structure can produce equitable solutions and mitigate harm from data practices.

Community engagement as a process involves time and a fixed sense of what one is building towards. Bilal offered the following as a way to frame the day’s conversations: “Whenever I feel stuck or against a wall, I ask myself, ‘Who are you accountable to?’ This is my north star for whenever my tools are not working, a meeting didn’t go well, or a policy door has closed.” To that end, these two communities offered insight into the long road traveled incorporating community voices.

(Re-)Starting the Work: Building Trust and Relationships

The Bay Area Health Justice Collective (represented by Lauren Pennachio and Virginia Hall) started from a Health Leads initiative interested in supporting healthy communities throughout the Bay Area; into a community-anchored project that emphasized housing affordability as their essential need. Ms. Virginia, a founding member of the Housing is Health Initiative, recollected her experience helping shape the group’s goals and project development with, as well as offset these positive experiences with a reminder of where the group initially began.

During an initial meeting, Ms. Virginia described the room as “full of medical professionals, doctors, with just a handful of other individuals that spent a lot of time quoting medical terminology and their clinical thoughts, not knowing that I was a certified nursing graduate who had some knowledge of the terms. I chimed in with my advocacy and activism background which felt too radical at the time. I powered through and interjected. I felt ostracized and I kept wondering who else in the group didn’t possess the entitled social status and how they felt.”

Eventually the initiative grew from 15 healthcare representatives, 2 community-based organizations (CBOs) and 2 community members in August 2018 to 15 healthcare representatives, 7 CBOs and 20 community partners by August 2019. Additionally, ownership of the project shifted to the community residents, with Health Leads taking a role in stewarding relationships with partners.

Building trust and a safe space for the Housing Is Health community would reaffirm its value when COVID-19 reached the Bay Area. “Our connection to our community allowed us to be responsive to what was happening during COVID,” Lauren said. They learned they needed to be more creative while still advocating for their core issue. They have focused on producing an education and advocacy series to help community members and caregivers understand housing rights, housing resources, and advocacy opportunities.

Similarly, Reinvent South Stockton Coalition (RSSC)’s Block by Block approach in 2013 helped develop strong relationships with the South Stockton community. RSSC (represented by Darryl Rutherford and Jessica Praprath) initially began as a grassroots effort to build community power and look at who was most affected by redlining and other historical practices of disinvestment. However, they too had to work to build trust among the community, given a history of grant funders coming into the community to extract data with no clear opportunities for the community to see what happened to that data. Jessica, a former organizer with RSSC, described the Block by Block approach as “walking door to door and just talking to people, seeing how they’re doing and forming relationships that way. People knew each other through events, planning for other events,” and helped to undo that history of distrust.

Their work, a promise to ensure data stays in the community as a means to undo the harm, and active engagement of community residents led to the creation of a RSS Youth Council in 2015, a space for youth leaders to organize and mobilize community-developed solutions, as well as the implementation of a Results Based Accountability framework to their plan to Turn The Curve on health and socioeconomic outcomes in South Stockton. According to Jessica, their process involved making a shift to giving their power to the community, as opposed to sharing it. This mindset helped determine what issues the community prioritized, as well as how to visibly display the outcomes of their work.

A Call to Action: Audience Engagement

During the webinar, Lauren and Ms. Virginia led audience members through a three-question poll to name action steps they would take to move forward with engaging community residents. Most participants focused on either access to health care (34%), behavioral health (27%), or housing (20%) as their essential need areas. When asked to indicate on a scale of 1 to 5 how well audience members engage their communities on these issues already, an overwhelming majority answered they could do a better job at that (1 – 3). After these baseline questions, audience participants identified with some of these action steps:

  • finding partners that do this well and ask them to guide their community engagement efforts (24% of respondents)
  • co-creating with community members criteria to guide decision making (6% of respondents)
  • sharing data and inviting shared analysis (22% of respondents)
  • giving power to community members in an upcoming decision-making process (44% of respondents)

Considerations from Panelists: a Q&A Discussion

Our questions and answer session resulted in concrete actions that groups can use to take their first steps.

Question: What and who brought community members to the table? What does it mean to staff community engagement?”

Health Leads & Bay Area Health Justice Collective, Lauren: It’s on us to members and staff community engagement. It was also on us to set community members up for success to engage. We welcomed healthy skepticism because people are protective of the communities they are a part of, and it’s on Health Leads to create a space where people felt safe to enter and participate in.” 

Health Leads & Bay Area Health Justice Collective, Ms. Virginia: It is important to bring everyone in a room that is aligned with [community] goals to make a project/collaboration work.

Reinvent South Stockton Coalition, Darryl: It matters who does the engagement due to histories of mistrust. Once the community saw that there was no financial or governmental interest in seeing a coalition come together, residents were more willing to voice their thoughts and concerns. We’re there to move the conversations forward. People have access to systems they haven’t had in centuries and it’s not always comfortable for these systems to be at the table, but it has been beneficial for all.

Question: How do groups move from consulting to equitable power sharing? 

Health Leads & Bay Area Health Justice Collective: it comes down to protecting the safe space they create for community members. Health Leads has the honor of holding this space – we have community practices and we protect [community-anchored practices and decision making]. When you need to be courageous in this space, you find a way to do so.

Reinvent South Stockton Coalition: the Results Based Accountability (RBA) tool has been helpful in keeping us accountable. Evaluations themselves can be intimidating but the RBA process whittles it down to these questions: How well are we doing this? Who is benefiting? Do we have the right interventions? and are we hearing the community in an effective way? If we don’t have the answers to those questions, we keep trying.

To view this webinar recording, visit here. Additional resources will be available on the All In Online Community. 

Interested in more All In offerings? All In, in partnership with the Network for Public Health Law, will be hosting a three-part series on Racial Equity Throughout Data Integration. Catch Part 2 (register here) on September 22 at 3:00 ET and Part 3 (register here) on October 14 at 3:00 ET.