Our Communications Manager, Katie M. Kanagawa, interviewed Professor of Epidemiology & Population Health and of Medicine (Stanford Prevention Medicine Center), Abby King, about her exciting and important work in community engagement and the Our Voice: Citizen Science for Health Equity Research Network & Initiative.
Can you start by telling us a bit about yourself, personally and professionally?
Sure. I am a clinical psychologist by training, so I'm a little different from a lot of the epidemiologists that are in the department. I went into clinical psychology because I've always been interested in human behavior, and why people do the things they do or why I don't do the things I should do [laughs], these kinds of questions.
My path has always been about trying to understand not just people's behavior, but people within their own environments and their contexts. And this led me to really appreciate the health equity and health disparities issues, that there are so many contexts that people live in in their communities that are so challenging when it comes to making healthy choices.
The U.S., for decades, unlike Europe and some other nations, has always been an individually-focused zeitgeist. If you look at a lot of the federal health policy documents throughout the decades, a lot of them talk about how health is the individual's responsibility, and that places all the blame on the individual, if they don't do the things their doctor asks them to do or that people know are “good for them.” It’s this blaming the victim mentality that I've always had problems with.
So what we try to do is really understand the context--the environments--that people find themselves in and how we can work with those environments, or teach people to change their own environments, to make it easier for everybody to live a healthy life without it taking up all of our time thinking about it.
Can you tell us about the Our Voice: Citizen Science for Health Equity Initiative, which you lead as Faculty Director? What is a “global citizen scientist”?
They come in all shapes, sizes, and forms [laughs]. But really the ultimate goal of Our Voice is to engage people and give them a voice in changing their communities for the better. So that's the underlying mission, to provide ordinary residents--many of whom have never been part of science, or know what a data point really looks like--the tools and the access to be able to collect meaningful data in their own communities so they can answer the kinds of questions that the community thinks is important.
For so much of our science, we sit in our ivory towers, and we know from past evidence what we think is important for populations, but that may not be the most important thing currently for the populations we target. We'll sometimes make attempts to ask people, but it's often not in a systematic enough way to really get those voices to the table. So, in our group, we specifically seek out those parts of communities and nations that have been underserved and under-resourced, and who we know as scientists are left out of the evidence space on virtually everything.
How did Our Voice begin, and what did you learn from those early years?
The program started back in 2010 or so, with a Stanford Office of Community Health seed grant of ~$3,000 that we were able to get. I had some fabulous postdoctoral fellows working with me. Together as a team, we got this funding and it was meant to develop an automated app that could be used so residents could collect the data that scientists had been collecting around a neighborhood, such as checklists and things to audit, and capture objective aspects of a neighborhood.
We decided we really wanted to know what people think are the most important things in their neighborhoods, so the tool we developed was based on photos and narratives, as things that people know and understand can be very compelling. It's qualitative data, and we realized, as we watched the residents collecting these data, how empowering it was for them. Some of the residents we work with have never touched technology before, and they felt the technical revolution had left them behind. Working with our very simple mobile app actually opened doors for them on multiple levels, because a lot of them realized they could use technology now and walk around their neighborhood to take photos. They usually focused their attention on a specific issue, which could be ease of getting places by walking or biking or public transit, or ease of buying food and food access issues, or feeling secure in the neighborhood and safety issues.
That's the thing we love about this model we've been developing. It can really be turned to almost any issue, health or beyond, that has an environmental, contextual component to it. And if you really think about it, almost everything does. And we have found that it is readily translatable to a variety of countries, cultures, and contexts across the socio-economic spectrum. Our Voice projects have been conducted in over 20 countries spanning 6 continents as well as across all major U.S. regions, including the state of Alaska.
Over time and multiple grants, we found that you don’t need hundreds of residents out there doing this work. We found, for example, that as few as eight to 10 residents in a particular location can come up with the priority issues around which they can build consensus and take action. What we do in this kind of community-engaged work that's a little different from others is that we have people focus on both the positive assets of their communities and the things that are barriers. Being able to turn residents on to thinking about all the things they really like about their neighborhoods and to give a more balanced perspective, I think, is incredibly helpful both to the residents who end up feeling good about where they're living and also to the decision makers with whom they share these data.
Once they collect the data, the residents come together and we teach people to facilitate meetings, so the residents can talk through their data. They share the photos and the narratives they've been telling about things, and they come up with a list of prioritized issues that they would like to address that are feasible and realistic to change. We believe that this process is particularly important for residents from underserved and marginalized communities who have traditionally had less access to the means for enacting relevant change in their neighborhoods. Advancing health equity has always been a foundational aim of this research program.
Over the years conducting this type of participatory action research, we have discovered its relevance for a broad array of issues affecting community health and wellbeing. In addition to health issues such as physical activity and food quality and access, research projects have also taken aim at key social issues such as gender-based violence. Mike Baiocchi, for instance, directed an Our Voice project on the Stanford campus with undergraduates to increase our understanding of the types of social and physical contexts on campus impacting students’ feelings of gender-based safety and inclusion. This fall, we are also starting a campus Our Voice project with Christopher Gardner and colleagues on the barriers to, and enablers of ,eating in more environmentally-sustainable ways as part of his recently funded Stanford Plant-Based Diet Initiative.
Our mantra at Our Voice is the Margaret Mead quote that says a few dedicated people can change the world. That's what we've seen firsthand.
“Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.” - Margaret Mead
What do you love about your work with Our Voice? What do you think others love?
We are trying to teach residents to present their story, because we know that decision makers change things, not with their minds, but with their hearts. You have to grab people's hearts. You get one resident up there telling a story about how they got hit by a car at an intersection because it did not have a crosswalk, and you can move the decision makers to act. That's really what it's about.
The great thing that I love about this, and Lisa (Goldman Rosas) and I've talked about this with other people too, is we all get more empowered in this process. Not only do the residents get empowered, the decision makers get empowered because they can solve a realistic problem in a feasible way (whereas other problems often can’t be as readily solved), and the researchers get empowered too. I have had so many of my research colleagues, some of them very quantitatively focused originally, who come into this with a little bit of hesitation, and, at the end of the day, they say, "These are my favorite projects." They feel so inspired watching these residents take on city hall, or whatever it is, and work together to be able to make changes that they find meaningful.
The other beautiful thing about this kind of research is it's the gift that keeps on giving. When the research ends, the goal is for people to realize this is just their starting point, this is their launchpad to continue to do amazing things in their communities. And, in collaboration with Lisa Goldman Rosas and Patricia Rodriguez Espinoza, we have been applying systematic methods, such as Ripple Effects Mapping, to capture more formally all of these many and varied impacts--both intended and unintended--that often accompany this type of participatory action research. For example, we have worked with ethnically diverse lower-income older adults in San Mateo County on an Our Voice project targeting food access in their communities, and then have learned several years later that they have taken their newly acquired communication and advocacy skills and focused them on other important issues, including affordable senior housing and pedestrian safety.
Can you give an example of an Our Voice project that stands out in your memory?
One thing we love to do is intergenerational research, where we have youth and adults and older adults working together and sharing perspectives.
I'll give you a good example from Mexico, which is one of the studies Lisa (Goldman Rosas) played a big hand in, along with Sandra Winter, Deborah Salvo, and several of our other postdocs and junior investigators. In Mexico, we were able to get young teens, 11 to 14 years old, to do this citizen science activity with their grandparents, because oftentimes, in many countries including our country, the grandparents are the ones that are watching the kids as the parents work.
The grandparents and the children walked around their neighborhoods and captured things and then had excellent discussions. One of them really stuck out to us because the older adults tended to see more of the good things going on in the neighborhood and less of what they would call the not-so-good things, and the young teens tended to see the not-so-good things that were going on and less of the good things. But when you put them together as a group, they were able to get more balanced insights about their neighborhood, a more realistic picture of the neighborhood.
One issue that came up was graffiti. There was a lot of graffiti in the neighborhood and the older adults felt this was really bad. It was ugly, they thought, and they didn't like it. The youth, of course, were the ones doing the graffiti, and they loved it because it was a way for them to artistically express themselves. They sort of had a meeting of the generational minds, this bridging across the two generations. The older folks really didn't realize they weren't doing it to be bad kids. They were doing it because it was fun and expressive. They talked about ways that the kids could do it, but just in certain areas or in certain ways.
Where is this type of participatory research heading?
There are a number of exciting directions in which this research is heading, including the pairing of our community engagement mobile app with cutting-edge sensor and digital technologies that provide further insights about how different factors affect individuals’ physiological, behavioral, and emotional responses to their local environments; exploration of how Our Voice micro-scale photo and narrative data capture can be combined with portable virtual reality and augmented reality technologies to enhance the persuasive impact of the data that residents share with local policy makers and stakeholders; and exploration of the best ways of integrating these types of rich smaller-scale data with “big data” platforms to provide a more comprehensive perspective on today’s complex issues (such as the COVID-19 pandemic) and their impacts on personal, community, and planetary health.