This is Part 1 of a 2-part series focused on community engagement in research. Click here to read Part 2.
Olivia Kachingwe, MPH
Health Equity Zone Project Coordinator
Women’s Resource Center
What is “community”?
This is tough question because I think there’s more than one way to define community. The word can seem abstract or even loaded. It comes with a sense of ownership and belonging – that’s personal.
“Community” really is however people define it. It’s whatever they see as the area that they are accountable to, that they care about and that they identify with. That could be as small as a two-block radius, or as large as all of Newport.
At the Women’s Resource Center, we choose not to define community on a personal level; we let folks define it for themselves. It’s not my place to define that for someone.
But when it comes to research and program implementation, we use boundaries pre-determined by the US government – we use Census-tracts. This makes sense for research: there’s a lot of pre-collected data, both at a single point in time, and trend data, that you can rely on when shaping your program. A lot of groundwork has already been done that one can build on and use to frame questions.
What is the focus of your work at the Women’s Resource Center?
The Women’s Resource Center is a domestic violence agency, and we’re somewhat unique in the movement because in addition to providing direct services, we have a fairly large focus on prevention. We currently serve as the backbone agency for one of 10 Health Equity Zones (HEZ) throughout the state. The HEZ’s are funded by the R.I. Department of Health and it is the backbone’s responsibility to manage the grant requirements, evaluate program implementation and maintain a vision for the future use of funds. Each HEZ defined their own geographic area of focus and consequently tailors their efforts to match the needs of a geographically targeted community. There are different needs in Providence than in Newport, for example, so the strategies implemented and needed partners often are not exactly the same.
How does place-based research differ from other types of research that aim to impact the population health of an area?
Place-based research means you’re tailoring your efforts to the specific needs of a pre-defined geographic area. So, you’re looking not only at the many diseases that are prevalent in an area, but you’re also examining the impacts of the built and social environment. In other words, you’re trying to determine how many things seen in a specific community – ranging from low literacy and levels of employment, to low social cohesion and social capital – impact the health of your community, both individually and with compounded effects. So, it’s a very holistic approach that often contradicts funding opportunities.
Funding is traditionally allocated toward the disease or a specific demographic -- youth, racial minorities, newly released prisoners and so on. With place-based research, the location, as opposed to the disease or demographic becomes your common denominator.
When utilizing funding that focuses on a specific disease or demographic population, it can very quickly become quite limiting. The communities and the environments in which people live are messy. Thus, funding has to be equally as malleable. It must accommodate the many factors that impact a community’s health outcomes and must allow researchers to look at the big picture.
With this grant, the DOH has given us tremendous flexibility and encourages us to do just that – look at the big picture. We can look at housing, transportation and food access as they relate to not only domestic violence, but overall wellness. These factors are all intertwined and in order to improve the health of our community, we need to address all of these factors simultaneously. But as many researchers know, funding streams tend to be much more siloed.
How did the prevention department at a domestic violence agency start doing health equity work?
Prior to receiving HEZ funds, the R.I. Coalition against Domestic Violence was one of 10 state domestic violence coalitions to receive DELTA FOCUS funds from the CDC for primary prevention and intimate partner violence work. This funding pushed the Women’s Resource Center to explore how the social determinants of health and factors on the outer layer of the social ecological model impact domestic violence. With this funding, the Women’s Resource Center was able to pilot projects that increase neighborhood-level social cohesion among youth. Research has linked low rates of social cohesion to increased rates of domestic violence.
This work is somewhat progressive for the domestic violence movement and demonstrates how we have come a long way from classroom-based primary prevention. We are no longer focusing on teaching children what a healthy relationship looks like. Instead, we are focusing on changing the environments in which they live and reducing the factors that research has shown to be connected to unhealthy relationships. We are using public health research and framing to inform the domestic violence prevention efforts.
The DELTA FOCUS work primed us well for the Health Equity Zone project. We had already done a lot of thinking and work around social cohesion and how that’s connected to domestic violence. So it was not a stretch for us to begin to look at other factors such as toxic stress, poverty, or truancy in relation to domestic violence and health more broadly. We were well positioned to take on a project like this.
How did you identify the social determinants in Newport that relate to domestic violence?
In our first year of funding, we conducted a Needs Assessment that allowed us to gather data on the community level. I talked earlier about using the Census-tract data; while that provides a good baseline, it only scratches the surface of the community’s need. There isn’t any qualitative information, so figuring out the story behind the numbers requires some probing. Moreover, depending on how you define community, census-tract data can be limiting.
Our Needs Assessment had six focus areas: Transportation; Open Space; Physical and Emotional Health; Education, Innovation and Economic Opportunity; Food Access and Nutrition; and Arts and Culture. That gives you an idea of the general content areas that we were focusing on as predictors of positive and negative health outcomes.
What did you do differently in your Needs Assessment that allowed you to get that data?
We were intentional from the start about building a collaborative group that included key partners from different areas of the community that impact each of our focus areas. We were also intentional about including partners from small, grassroots organizations that are very entrenched in the community and in tune to its needs.
We put together a working group for each focus area, which consisted of a lead organization in the community, as well as representatives from other organizations with content-area expertise and invested community members. We also hired 12 Resident Consultants to be active members of the working groups. Resident consultants are those who live in the Health Equity Zone. That wording was intentional on our part. The word “consultant” often connotes expertise and someone who’s valued. The consultants were hired to demonstrate that it’s important to not only get feedback from the community at the beginning of any project, but to also value their input as you would other items in your budget.
Next, we let each of the working groups – and this always makes me laugh because it was a leap of faith on my part – define what their portion of the Needs Assessment would look like. We let them decide the questions they wanted to ask, who they wanted to ask, and how they wanted to ask them. Whether it was through a focus group, survey, observational data or key informant interview – we let them figure it out. It felt really important to empower them. This required a lot of learning in real time; most had never conducted research before, so it made me think through how to articulate and empower folks to make these decisions so they would be well-informed decisions. It’s also a learning point for researchers. We typically think, “Ok, just let me make the decision,” but we were students once, too. The challenge is, how do you, in a simplified, to-the-point manner, deliver information and knowledge to communities and empower them to make decisions for themselves?
It’s important to not only get feedback from the community at the beginning of any project, but to also value their input as you would other items in your budget.
What were some of the ways you helped empower the working groups?
During both resident consultant meetings and meetings with the larger collaborative, we covered the basics of research methods. We gave the collaborative the research knowledge they needed to succeed. Also, although we allowed them to come up with the questions they wanted to ask, we then took these questions and on the back end adapted them so that they were worded appropriately for either a survey, focus group or key informant interview protocol. This was done mostly by pulling questions from preexisting surveys that got at the heart of what they wanted to ask. It allowed for that balance of letting them ask what they wanted to ask, while also creating a tool that got across their intended meaning with each question – in essence, it reduced concerns around survey validity.
We ended up with a survey that included questions from four of the working groups. This survey was administered both online and in-person, in English and Spanish. We also conducted 16 focus groups across the lifespan ranging from middle school kids to seniors. The Education, Innovation and Economic Opportunity working group was unique in that they wanted to collect 20 storytelling narratives. They very consciously did not want to assign value to certain life choices through asking pointed questions that addressed things like income, employment and education. Thus they landed at only three very open-ended questions. “What were your hopes and dreams as a child; Is your life what you dreamed it would be now; and why or why not have things turned out that way.”
These broad questions allowed for really powerful narratives around the challenges residents face in achieving their hopes and aspirations. Or, what helped in achieving them. The responses turned out to be much more informative that just getting basic demographic information.
What are your takeaways after employing a less traditional research process?
It was a leap of faith on our part but it resulted in a much better outcome than we could’ve expected. We had more engagement among residents living in the HEZ than other entities conducting similar data collection projects.
I attribute this to getting the community involved at the beginning and empowering them to make important decisions that would impact the success of the project. In addition to us at the Women’s Resource Center wanting a good outcome, there were an additional 40 to 50 people living in the community, invested from Day 1, who wanted a good outcome, too. There were essentially 50 PIs!
And it worked. We had people door knocking, sending the surveys to their relatives, passing it out at their own businesses and posting it on their private Facebook pages. Everyone was really invested in making sure we heard back from folks. And I attribute that to how we structured the process.
What should researchers keep in mind who are interested in employing a similar model when collecting information from a community?
This type of approach requires letting go of a desired outcome, not only at the very beginning, but every step of the way. And I don’t mean letting go of what you want your final findings to say, I mean letting go of your expectations around the process – how you’re collecting the data, the time period it will take, who you’re talking to. The more you let go, the more responsive you can be to what the community is telling you it needs. For some of these decisions there may not be much flexibility, but it’s important to highlight for yourself which things are set in stone because they have to be as opposed you just wanting them to be. I often ask myself “Is this something I need to do, or is this me getting in my own way.”
Read Part 2 of this series, which focuses on strategies for successful community engagement in research, as well as tips for avoiding common missteps.