Posted April 19th 2017 at 11:32 am by
in Health, Health & Boston, PAR, PAR in Boston, Participatory Action Research

Participatory Research in Action: Designing Research with and for Residents

Part of research team. Left to Right: Carl Baty, Dina Abreu, Arnetta Baty, Leigh Caroll, Eric Andrade, Andrew Binet, Amy Blanchette, Kristina Benner, Vedette Gavin, Gail Roderigues. Photo by the Conservation Law Foundation.

Leigh Caroll and Andrew Binet are facilitating a Participatory Action Research (PAR) process with teams of Resident Researchers in nine communities around Boston to design and carry out research that examines the relationship between community health and urban development. This is part of an effort to ensure that future development in these communities contributes to the health and wellbeing of all residents. To read more about this study, please click here.

Insiyah Mohammad Bergeron of CoLab Radio interviewed Leigh and Andrew about their work on this project. Lot of advice here for those who want to start doing this type of work! 

Insiyah: How would you explain Participatory Action Research (PAR) to someone who doesn’t know what it is?

Andrew: PAR is research that is designed by people who are most affected by the issue being researched. People who are most affected by a problem are usually the ones who have the best ideas about know how to fix it. So PAR is about organizing inquiry to support that premise, and allowing people to better position themselves to influence decisions that impact their lives.

In policy-making circles, different types of knowledge have different types of power, and some types of knowledge (e.g. information in an academic journal) have more power than others (e.g. stories about a place passed down by family members). PAR is about ensuring that people’s lived experiences and knowledge have the power to influence and ideally guide political decisions.

Leigh: PAR should also be action oriented and focused on a goal. People are tired of researchers coming into their communities, collecting information that they don’t get access to, and never seeing tangible changes that affect their lives positively as a result.

Insiyah: You used a PAR framework to evaluate an equity fund focused on neighborhood health. Why did you choose this approach and how has the project evolved?

Andrew: This project actually started as 0% PAR. This was meant to be a traditional quantitative evaluation of the health impacts of the Conservation Law Foundation’s (CLF) Healthy Neighborhoods Equity Fund, augmented by some qualitative data about residents.

But early on, MIT Prof. Mariana Arcaya and CLF’s Vedette Gavin, who lead this project, realized that for the research to actually be innovative and meaningful, it should be done through a PAR process. So we designed a research model wherein Resident Researchers, who live in the nine communities where the project is active, are leading the research design process.

All of the Resident Researchers live in communities being threatened by gentrification. Our goal was not only to understand the relationship between urban development and community health, but to equip residents to use this collective understanding to fight for the kind of development that is conducive to their well-being. We set ourselves a high bar, and the Resident Researchers continue to raise it even higher. I’m confident that we’re moving in the right direction as the project grows and the Resident Researchers begin to take local action with their findings this spring.

Leigh: In academia, often this type of research is carried out by graduate students going into communities to collect information. This project is different because we are working with about forty resident researchers, and they are the ones who developed the research process and our survey questions. The research is a reflection of what they deem to be important to understanding the relationship between neighborhood change and health.

Celebrating the first year of the research project

Insiyah: What are the strengths of a PAR approach? Why should more of us be engaging in this kind of research?

Leigh: PAR, if done well, can expand the imaginations of all involved. There were many times when I realized how differently people think about the same situation, which might have been lost in a traditional research project. For instance, once we were thinking together about research ethics and making sure that the benefits of our survey outweighed the risks for participants. I thought that people might not want to disclose low incomes or issues related to poor health. But then another member of the research team said that people who state that they have high incomes might be worried about getting robbed. As a result, our ethics discussion expanded to include attentiveness to other types of risks and benefits that I would have never considered.

Andrew: PAR also gives people a sense of ownership over the data that is collected. One of the things that I am pleasantly surprised by is the level of identification that Resident Researchers have with the project. No one has worked much more than 80 hours on this project in the past year. But the way that people talk about this as something that they do, and something that they care about, and that adds to their lives and communities is very meaningful to me. People identify strongly with being a researcher and I love that. It’s not just buy in, its identification.

Additionally, the PAR process allowed us to collect information that is more nuanced and rich than we might have if the MIT team designed the research ourselves. For instance, Professor Arcaya was interested in how people are able to fulfill their “job of life” at different points in their lives. The Resident Researchers wanted to know how people are able to keep moving towards a fulfilling life in their own community even in the face of changes that are coming with urban development. So we melded those two questions into our “Prioritization” section, which asks people to indicate which priorities are most important to them, and of those that are important, whether they are able to fulfill them. We brainstormed a big list of potential priorities with Resident Researchers, and the youth Resident Researchers from Green Roots in Chelsea helped us craft the question so that we could learn about people’s ability to meet those priorities within their current community. We believe that this question was successful because it was a hybrid between institutional and grassroots perspectives and knowledge.

Our preliminary findings show that within our survey population, someone’s health is more strongly related to their ability to meet their own priorities than to their income level. This supports our hypothesis that merely throwing money at problems isn’t enough; rather, the people facing these problems must be at the table from the beginning to clarify what their priorities are and how urban development can support their community’s self-determination.

Insiyah: How do you expect this project to change over time, now that you have completed the pilot phase?

Leigh: This year, we were very formulaic about the responsibilities of the residents. They participated in 6 workshops to design the survey, gathered 50 surveys in their communities, and were involved in the initial stage of the analysis before it got highly technical. We were good at giving people space within that structure but were not too creative about other ways that they could be involved.

Over the next few years, we want to expand the set of roles for resident researchers. Our survey was a great research tool to start with because it was straightforward to administer and build across the nine research teams. But in future years we hope that the residents will decide what research methods to use. The MIT team is also still leading the data analysis piece, in part because of technical capacity. Everyone is conscious of this, and we all want to get better at sharing leadership. Many of the researchers have noted roles that they’d like to take on in the future, such as leading workshops or training new researchers, and we want to be diligent about facilitating that.

The first year has been a lot about getting to know the residents and building our identity as a research team. Embarking on a deeply participatory process is a long-term commitment, because it’s not going to be perfectly participatory right away. So much time needs to be spent building relationships, understanding what everyone on the team has to offer, building a shared language, understanding each other’s processes of analysis, and building trust. This is a ten year long project, and we’re excited to see how it will grow and how power will shift over that time.

Insiyah: What advice would you give others who want to design a project like this one but don’t know where to start?

Leigh: Don’t be afraid of the ambiguity! I remember being worried because we didn’t know what to expect. I felt better after we spoke to Mark Wieland, a doctor at the Mayo clinic, who has done many PAR projects. He reassured us that that we would figure things out with the residents. Then it hit me– if you’re planning everything yourself it’s probably not a participatory project.

Andrew: The biggest thing I have learned in this project is how to build the plane while flying it, and not in a careless way, but trusting that you can figure something out with people when you sit down with them. I think part of my the anxiety came from expecting that when I wound up in a room full of people, how things went would be a referendum on me, which is far too self-centered of a way of approaching this and ultimately self-defeating. But that is all I had known about research and how people make claims about what is true. It took me some time to trust that collectively, we could create something powerful and new, and that we would hold responsibility together and be stronger for it.

Insiyah: How can institutions like MIT support projects like this one, which center the voices and perspectives of community members?

Andrew: Institutions like MIT can use their power to launch these types of projects, when they have never been done before. From the beginning projects should be co-led as much as possible with the community. And then over time the balance of power should shift to be more and more community driven.

Andrew at a workshop with resident researchers

Leigh: The institution should also play a role in acknowledging the fraught history of research and in beginning a healing relationship with communities where trust has been severed. We led an ethics training where we discussed the Tuskegee Syphilis study and why research review boards exist. One of the Resident Researchers shared that he had lived through the era of the Tuskegee trial, and when black people in his community heard about the trial they stopped going to the hospital because they no longer trusted that health care institutions looked out for black communities. Afterward, he told me that our ethics discussion was the first time he had heard a major institution acknowledge the Tuskegee trial, and that it was wrong. Acknowledging racism in research historically can start the healing process between institutions and the communities they have hurt.

Andrew: Changing how the institution itself works is also important. We were the first ones to have approached the Institutional Review Board (IRB) at MIT with this type of resident-led research protocol. They didn’t have experience with something like this, but were very open and cooperative as we figured out how to make it work. IRBs are often a huge challenge for PAR, but we ended up having a very positive experience, and knowing that MIT’s IRB is now equipped to work with PAR projects means a lot.

We also have to think about ethical resource allocation. We paid Resident Researchers a living wage, compensated all respondents well, and had plenty of dedicated resources to work with them on knowledge-sharing and follow-through in their own communities.

Leigh: Stepping back, it’s also important to recognize that ultimately PAR is an academic framework; in reality, the collaborative problem-solving and processes of inquiry that it relies on are what everyone does every day as they figure out how to make a life. And that’s the problem- what is intuitive and meaningful to people is not always valued by people making the decisions that affect our communities. Our task, doing PAR in academia, is to subvert this hierarchy of knowledge.

The healthy Neighborhoods PAR Study is being conducted in partnership with the Conservation Law Foundation, and funded by the Robert Wood Johnson Foundation. The views and opinions expressed on this blog do not necessarily represent the opinions or positions of the Robert Wood Johnson Foundation, Conservation Law Foundation, and the boards and supporters of these organizations.

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