Rules of Engagement
Dr. Molly Martin is rapidly developing an impressive portfolio of successes with her asthma-related research, including the CHICAGO Trial. Yet when I sat down to talk to her about her research, she explained to me that her focus is truly on community engagement, specifically the critical role community health workers and community-based participatory research models have in addressing health disparities.
Martin, an associate professor in the UIC Department of Pediatrics and a Fellow in the Institute for Health Research and Policy, said she has always been driven toward reducing health disparities and global inequities. In medical school she was heavily involved in international health work, but soon realized she did not have to travel to disadvantaged countries to address inequities- there was plenty of need locally.
During her time overseas, Martin was introduced to the community health worker model and how these individuals can support an area’s economic, social and health development. From there, she used her experience in pediatrics and asthma to develop a research program using community models to help address health inequities.
Said Martin, “I am not an asthma researcher so much as I am a researcher of community models. Asthma is a good disease to focus on because of the social causes and implications, and because it is reasonably manageable with the right behaviors.”
The Community Health Worker Model
Martin describes the community health worker as a person who fills the gaps in our healthcare system between clinical care and community-level prevention and outreach. These are the “go-to” people in our lives, the natural leaders, the people who always know whom to call or how to get things done. The community health worker model provides these people with basic training on health and the healthcare system. The workers then help support patients and community members to link with the appropriate clinical or community resources and make necessary changes to improve their lives.
“These are not doctors or nurses. They are not employed because of health credentials, but because they help people and have a shared experience with those they will be connecting with. They advocate, educate and support,” said Martin.
Martin initially faced challenges in her research. While the community health worker model is well established in other parts of the world, community health workers are harder to find in the United States. She eventually found community health worker programs in Chicago, and upon reviewing the literature, realized the evidence on the community health worker model’s efficacy was sparse.
“When you are in El Salvador after a war had devastated all infrastructure, it is very clear to see how the community health workers support economic, social and health development. It is harder to see the effects of such a community-based model here where there are so many other programs,” Martin explained. “The best way to build more community-level infrastructure and supports into our health care system is to provide evidence that then influences policy and health decisions.”
Martin emphasizes that the community health worker model is critical to populations who suffer from health inequities, as many of these people do not know how to navigate the health care system and lack the resources to help support them.
She offered an example: “If I went to the pharmacy and was told my prescription was $200 I would refuse to pay and I would call my insurance company. For others, they don’t know to question the pharmacy. They feel they have to make the decision to pay for the prescription and not feed their family or to not take their medication. So many people just aren’t properly empowered to advocate for themselves.”
As the link between health or social services and the individual, community health workers can serve a variety of roles. One may be a cancer navigator accompanying people from pre-diagnosis through treatment and follow-up. The navigator may help translate, set-up appointments, and provide transportation to treatment. Other community health workers are at social service agencies and assist with immigration paperwork and helping families access food, housing and healthcare resources.
Martin believes community health workers are also excellent barometers for when patients need additional support from healthcare providers.
“My projects are now looking at how to incorporate the community health worker permanently into our health care system,” she stated. “Ultimately we need these people so when someone is having trouble meeting the targets set by their clinician there is someone who can help bridge the gap.”
Community Based Participatory Research
Working in tandem with the community health worker model follows principles of community-based participatory research (CBPR). CBPR is a collaborative approach to research that enables community members to more actively participate in the research process from conception to the communication of results.
Martin’s view is that- in its purity- research is supposed to be about asking questions and proving them right or wrong via controlled trials and experiments, but real world environments may make the more “pure” research controlled trial model difficult. She believes that the questions asked and the methods used to test a hypothesis have to be meaningful to the community the outcomes are intended to serve and that the only way for this to happen is for people to be engaged in the project throughout the process.
“I go with the approach that the process of research has to have meaning- not just the outcomes. I think CBPR tries to embrace that,” said Martin.
Martin asserts that CBPR can address innovative questions. In her experience, people understand research concepts like randomization, and they appreciate not being treated like they are being “experimented on.” Rather, they feel empowered.
While some researchers may think that the CBPR model is difficult or complicated, Martin points out that study enrollment struggles often occur because the target population is not properly engaged. They do not know or trust the research team, they do not understand the study, and they have no reason to participate.
“You may not like CBPR, but sometimes the only way you are going to get 400 people enrolled in your study is if you somehow make them feel empowered enough to trust you and sign up,” she said.
CBPR can be time consuming. Martin explains that having an “in” with the population you are studying can expedite the process, but if you are starting out with no introduction it is going to take some time. Martin spent her first years in residency going to community organization meetings and “just hanging out.”
“For a few years I just kept showing up and I would help with health fairs but didn’t do much else,” she said. “Then in my fellowship I had the time to actually do something. I said, ‘These are the skills I have; what can I do for you?’ At that point, they trusted my words and gave me access to their organization, but they wouldn’t have if I hadn’t been demonstrating my commitment towards their organization and mission for so long.”
However, CBPR does not always follow this process. If, for example, an opportunity for funding presents itself, there may not be enough time for a community group to provide input on the research plan. Martin insists that CBPR is still possible if the research team can find an organization whose needs and mission align with the project. The organization may not have directly contributed to the research plan, but they did determine their mission, and the research team is offering a mechanism to help achieve it.
Martin also describes the long-term community benefits of CBPR, which include employment, infrastructure and skills gained through the research process. When the project is completed, these things remain in the community and improve its sustainability.
Martin commented, “If researchers bring in resources and then pack up and leave, that process serves no one.”
In addition to her research efforts, Martin participates on a CCTS Community Engagement Advisory Board. The community engagement boards help investigators with common challenges, like study recruitment. Martin explains that often the answer is that they have not effectively engaged with their target population. The boards also help investigators look at a question in the most comprehensive CBPR angle before the project is designed to help avoid back-end problems such as participant retention or communicating findings.
Her next goal is to follow her work on the community health worker and CBPR models forward. She wants to understand how these models can integrate into our current healthcare system, how they are most feasible and what kind of return on investment can be expected down the line.
Martin summarizes her thoughts by stating, “For me, the reason I do research is because it is a mechanism for targeting social justice. Through research we can try and build better systems and models that will hopefully help resolve health inequalities.”