Alyce Adams Brings Health Equity and Community Engagement Experience to Faculty Advisory Board
Alyce Adams is the newest member of Stanford Impact Labs’ Faculty Advisory Board. She joined the university in February as the inaugural Stanford Medicine Innovation Professor and is the director of a new Office of Health Equity and Community Engagement in the Stanford Cancer Institute. Her work focuses on reducing racial and socioeconomic disparities for individuals with chronic diseases. She is especially motivated to shorten the time between research and impact—and the distance between researchers, health care providers, and patients and communities. To do this, Adams says, researchers and community partners need to define the problem together, communicate clearly across different kinds of expertise and experience, and have regular, structured interactions.
Adams previously spent twelve years at Kaiser Permanente Northern California’s Division of Research where her research focused on reducing disparities and increasing health equity. “When I was approached about the position here at Stanford last year, I had the advantage of being able to talk to Jeremy Weinstein about Stanford Impact Labs. It really resonated with me, in terms of the ability to shorten that period between research findings and actually making an impact.”
Most of us are scientists because we’re curious about the world, but also because we are motivated by death or disability in our own family.
Like many scientists, Adams’ interest in making sure research has an impact in people’s lives is personal as well as professional. “Most of us are scientists,” she says, “because we’re curious about the world, but also because we are motivated by death or disability in our own family.” Growing up, Adams spent time in Pine Bluff, Arkansas with her mother’s two aunts who lived together and cared for each other after they were widowed. “Each time we went back,” Adams says, “they would have more disabilities related to diabetes or heart disease. One aunt lost her sight completely over the years; the other had multiple amputations.”
When Adams asked why this was happening to two highly intelligent, motivated women who had health insurance, the response she got was usually something like “that’s just what happens to us.” The clear implication Adams says, was “if you’re a Black person, you’re going to get diabetes and this is what is going to happen to you. As a kid, that struck me as wrong. And as an adult, I wanted to do something to address it.”
This motivation to understand health policy and improve outcomes for people of color with cancer, diabetes, and hypertension, also led Adams to work directly with communities experiencing chronic diseases. She shared what she has learned from community partners to help bridge the gap between research and impact, and between patients, community partners, and researchers.
Define the problem in their voice
It’s important to start by listening to community partners, including patients and their families, to understand what the issues are for them. “Defining the problem through their voice,” Adams says, “helps get much more of the meaning behind the work from the outset.” It clarifies what the real issues are so researchers and community partners can design the work—and the solutions—together.
Make sure it’s a two-way street
Equally important, Adams says, is to bring the principles of “bidirectionality” to the relationships. It’s important to be “super clear about the goals and why we are coming together.” It’s not just checking a stakeholder box, but about building trust, relationships, and deep understanding of other people’s constraints and experiences. When it comes to changing policy, Adams says, “you can sit there and wag your finger about unintended effects of policies, but if you don’t fully understand the pressures and the hard decisions they have to make, then you can’t really ask the right questions in a way that can be helpful to move the conversation forward.” At the same time, Adams describes how much she learns from talking with community partners. “Often if I’m stuck,” she says, “I’ll call one of my community partners and they help me think differently—they just have a different way of coming at things” that helps keep the work moving forward and closer to impact.
It’s not just checking a stakeholder box, but about building trust, relationships, and deep understanding of other people’s constraints and experiences.
Clear communication and plain language
Adams says researchers sometimes feel trepidation when it comes to working with patients as partners. Some of those worries are about leaving patients behind when they focus on sophisticated mathematics. These different kinds of partnerships “force us to speak in plain language,” Adams says. “If you can explain it to somebody else in terms they understand, it’s a testament to how well you know it and you’ll see they grasp those concepts very quickly.”
Ongoing, structured engagement
Building an infrastructure to make it easier for researchers and community partners to engage is really important, says Adams. But it’s also about using those structures regularly and over time. Community partners, says Adams, have “no reason to trust us unless we’ve built that trust over time.” Those structures and processes need to keep communication, openness, transparency and respect top of mind. “We need to keep asking, ‘Am I hoarding information? Am I communicating appropriately? How am I contributing to the issue as opposed to helping to solve it?’ We all live here together. Let’s all figure it out together.”
Connecting human experience
Another worry about these kinds of partnerships is whether patients and partners and clinicians will get along when you put them in a room together. Adams says the opposite has been true in her experience. More often, she’s seen patients and clinicians have fascinating interactions with each other. In one case, she says, clinicians described their tendency to be cautious about sharing too much information with patients out of a desire to protect and be kind to patients. The patients quickly let them know that clinicians “don’t need to soft pedal it” because they are the ones with the disease and need to know the facts, even if those facts are hard to hear. Adams says these kinds of interactions are really helpful, for clinicians and patients. It connects them as fellow human beings working together on a problem they both care about solving.
Adams says the social injustices of the recent past—including the disproportional impact of COVID among communities of color—has created “a window right now that is open wider than it has been in the past” to put these lessons to work to reduce racial disparities in healthcare. Too often, she says, when something bad happens in the United States in terms of health or safety, there’s immediate energy and a band-aid response. Then, everyone forgets and goes back to the status quo. “What’s different this time,” says Adams, “is the focus on the foundation being messed up and that instead of band-aids, we need to see what’s going on structurally and fix that structure so we can make progress to what we want.”
Not all research has to be community-based participatory research. But in many cases, turning research into public impact will happen faster and benefit more people if it is shaped by those with the most proximity to the issues. Community engagement that prioritizes trust, empathy, plain language, open communication, and ongoing partnership are key ingredients in that work and in finding solutions.
Adams cautions “not all research has to be community-based participatory research.” But in many cases, turning research into public impact will happen faster and benefit more people if it is shaped by those with the most proximity to the issues. Community engagement that prioritizes trust, empathy, plain language, open communication, and ongoing partnership are key ingredients in that work and in finding solutions.
*Written by Sarah Jane Staats, strategic communications and engagement advisor to Stanford Impact Labs.