Photo by Jean-Frederic Fortier | Unsplash
“You still want to talk with us?”
The members of the group were surprised. The assembled scholars, scientists, community members, and leaders from across the US had worked closely with the Association of American Medical Colleges (AAMC) Center for Health Justice to develop the recently released Principles of Trustworthiness, 10 key standards for helping to heal long-standing distrust of institutions (including medicine and public health) in marginalized and under-resourced communities. They had spent 10 months working with the AAMC to create the principles and a community video about social justice, racism, COVID-19 clinical trial participation, community engagement, and trust.
A month after the principles had been shared publicly, they hadn’t expected the AAMC to be interested in continuing their collaboration. According to Karey Sutton, PhD, Director of Research at the AAMC Center for Health Justice and primary lead for the community video, the group didn’t expect the AAMC to invite them to stay involved although the project was over.
“I’ve never been part of project that was this collaborative,” one woman said.
As Sutton recounted, “[The community collaborators] were surprised they were seen as partners throughout this work, from the conceptualization to the implementation to the dissemination.” People in health care and public health, she explained, “may talk about community engagement, but we’re not necessarily thinking about the process and the methodology.” Too often, Sutton noted, “communities feel that they have been taken advantage of. After we get what we want [from them], we don’t tell the community about the outcomes. We don’t ask them about the metrics of success [we should be using]. We don’t even make them part of the evaluation processes.”
Using the Principles of Trustworthiness is meant to change that. The AAMC Center for Health Justice developed the principles in what Sutton calls “a highly collaborative process” so any organization can learn how to continuously earn the trust of people in their communities and to develop strong working partnerships for the good of all. In a recent interview, Sutton described how to use the principles to make building relationships in communities more than transactional.
On how the Principles of Trustworthiness are not a “to-do” list
Though they are listed in numerical order, [the principles] are not intended to be a checklist. Utilizing these principles will help any type of organization to demonstrate their trustworthiness to their communities. The foundation and the theories for these principles are not new. They’re based upon years of community-engaged research and community-centered practice, but we’re using a new approach to move this work forward. What makes these principles different, and why they’re so necessary, is that they represent a paradigm shift. It now places the onus and the responsibility of building trust and earning trust on an organization rather than the communities.
On why trust must be earned, not expected
During the summer of 2020, while we were going through social unrest and the pandemic, we heard many people say that communities should just trust medicine and science and they should just trust the vaccine [for COVID-19 that were then in development]. We didn’t hear a lot publicly about the foundations of this distrust.
[Science and medicine] have created inequities for years. These inequities play out in the [inequitable] distribution of resources among different communities. One of the participants in the community video said, “The system has failed us, and the system has always failed us.”
We’ve been talking about the need for more diversity and community participation in clinical trials for many years, so it was good for that to be a priority during the COVID-19 vaccine trials. But going into communities where you don’t have relationships and trying to get something from them — like participation in a trial — and then disappearing once you’ve gotten whatever you needed, never to be seen again, is what creates and worsens distrust. We wonder why we’re always rushed and hurried while trying to get these participants instead of taking time to build long-term relationships and seeing communities and community members as shared partners in this work.
Principle #10 of the Principles of Trustworthiness states, “The project may be over, but the work is not.” We’ve built relationships with our collaborators and those who participated in the video. We’ve released the principles, but we still have monthly meetings to talk about the work. There’s still work to be done.
Earning trust requires taking certain actions. There are processes, structures, and policies within our organization that need to be reviewed and may need to be overhauled. Trust is not earned overnight. It is not a conversation we can have today and then I have your trust tomorrow. The process of earning trust is an iterative process. It takes a lot of flexibility and humility on the part of both an organization and a community. It takes a lot of committed and passionate people to move it forward.
On the real meaning of “community engagement”
Meaningful engagement means thinking about the community as a shared partner and a shared leader in this work. It means I’m not moving forward without my partners’ input and their blessing on whatever initiative we’re working on together. Also, as we state in Principle #2, I need to remember that I’m not the only expert just because I’m coming from academic medicine or a nonprofit organization. Meaningful engagement means we understand that we have an opportunity to learn from our communities. It is a bi-directional learning process. It means we’re coming to the table as equal partners.
On how the process of engagement is as important as the product
We learned throughout this process that we had to be flexible. We had 13 hands-on collaborators and then had 30 people that were part of the video. For each session of the video, for each piece of feedback we needed, we had to go to all 43 individuals to see how they felt about the principles, the video, the toolkit, the interactive discussion guide, etc. Principle #9 of our Principles of Trustworthiness says, “If you’re gonna do it, take your time, do it right.” As we were going through this process, we wanted to make sure we were operationalizing our work through the lens of the Principles of Trustworthiness that we were developing.
Investing true time in the community — and with a range of different organizations — when you’re not working on a particular project is so beneficial to the overall outcomes for anything else you want to accomplish. Principle #7 says, “There’s more than one gay bar, one ‘Black church,’ and one bodega in your community.” This means we have to recognize the many assets and resources that are within a community, not just the ones we already know.
This type of work takes spending real time in the community and making those relationships. That’s the only way to earn the trust of the neighborhood grandmother who knows everybody, and everybody respects. This is more than having a community advisory board and checking that off the list and saying that this is our community engagement commitment.
This kind of deep engagement also means time and investment for more than the individual researcher and individual program manager. You have to make sure there are systems and processes in place at the organizational and leadership levels that allow individuals within your organization to take that time in the community and value that work.
Editor’s note: This interview has been edited for length and clarity.
Principles of Trustworthiness Community Video from AAMC on Vimeo.
It’s Not You, It’s Us: Earning Trust to Build Community Connections
100 Million Healthier Lives Advancing Equity Tools