How do you approach underserved communities for collaboration in your health research? With humility and flexibility, says Dr. Katherine Tossas, a cancer epidemiologist and Director of Catchment Area Data Access and Alignment at Virginia Commonwealth University (VCU) Massey Cancer Center. As part of our People of Precision Health Podcast, Vibrent Health recently interviewed Dr. Tossas in her work engaging communities and catchment areas in cancer research as it relates to health disparities.  

As a native Puerto Rican, she has used her experience to develop some incredibly useful perspectives and approaches in approaching underserved communities. Some of these included sharing resources with communities, not having preconceptions about communities, understanding the limitations of research data in telling the full story, and more. 

Collaborating With an Indigenous Community to Study Their Cancer Rates 

At the start of our interview, Dr. Tossas mentioned The Chickahominy TRUTH Project, a powerful example of how the interplay between community engagement and research can make an impact with underserved populations—particularly indigenous populations. “TRUTH is an acronym we created together with the Chickahominy indigenous community that represents Trust, Research, Understand, Teach, and Heal,” Dr. Tossas said. “Trust came first because of the loss of trust that many underrepresented communities have acquired over time in health care and health research that we need to earn back by collaborating and developing the program together.” 

Initially, the project came as a concern that the Chickahominy tribe was experiencing high rates of cancer. As an epidemiologist, Dr. Tossas helped them to draw a map of incidence across the community and to investigate the epidemiology of the specific cancers in it. She found that there was in fact a significant cluster of cancers in the community more than what could be expected. 

In partnering with the community to do the research, Dr. Tossas’s team has given community members training related to IRBs and qualitative interviewing. Research staff and community members visit the community as a dyad to do interviews about cancer risk perceptions, health care knowledge, et cetera, as well as conducting safety tests to the community’s well water. “By the end of the project, we hope to give the results to the community, so that they can decide what to do,” Dr. Tossas said.  

Learn more about the Chickahominy Truth Project Here:

Engaging Under-Represented Communities Means Sharing Resources and Staying Humble 

When it comes to engaging communities in research, Dr. Tossas discouraged study teams from seeking to ‘empower’ communities, and instead approaching them in order to align with them. She said that as a researcher, “my job is to align with the community’s power, to stand alongside them so that they make decisions as to what to do.” 

She also stressed the importance of cultural humility and flexibility when engaging with communities. When researchers come with an idea and funding to a community, there is immediately a power differential that needs to be acknowledged and redistributed for fair collaboration. Hence the need for humility. One way to redistribute power, Dr. Tossas said, is by sharing resources. While not a popularly held belief in the research community, she believes in equal financial resources sharing with communities, alongside the conventional approach of sharing intelligence.  

Humility also means coming in with few or no assumptions as to a community’s shared identity or attitudes. Dr. Tossas remarks how her research team explored the spiritual aspect of how the Chickahominy community attributed causes of cancer. The research team had initial questions that were informed by animistic practices common in many indigenous communities, which did not accord with the traditional Christian practices adopted by the Chickahominy community over time. “It was a great moment of humility where we had to be flexible in adapting our initial assumptions about the community,” she said. Humility was also important as it related to bringing community members in as part of a dyad to help researchers engage and interview other community members. 

Watch the full podcast here: 

Health Disparities Research Demands Respect and a Shift in Thinking 

Dr. Tossas remarked that health disparities research is a legitimate science with the same scientific rigor of translational, clinical, and basic research. She said, “There are metrics that have been validated, there are methodologies, and grounding frameworks that demand respect.”  

She highlighted that in really collaborating with a community, the value that it can bring to research can be unexpected, and that researchers need to be ready for anything. As an example, Dr. Tossas was recently asked to present on emergent themes in the data of the TRUTH study alongside the Chickahominy community, who presented before her. “I had no need to present, because they shared what I’m seeing on the data as well,” she said. “Data is valuable to researchers in certifying that a problem exists and ways to change outcomes, but the community intelligence is equally valuable.” 

For that matter, she pointed to the need for a paradigm shift around how health disparities researchers decide what data is or is not. While researchers design questions to illuminate correlations in certain areas, she reflected that this is to the neglect of other areas that may inform what the data and thus what the results are in a study. And while qualitative scientists focus on words and quantitative researchers focus on numbers, she said, “there’s a lot of data that is simply ‘information’ that isn’t captured.” She mentioned that early in her career, she did a study evaluating performance of a cancer center that had a huge gap in data simply because her surveys and other data capture methods couldn’t account for structural inefficiencies and equipment deficits. Again, this is where flexibility and humility present themselves as viable approaches in community engagement and health disparities research. 

Defining Catchment Areas Can Hold Cancer Centers Accountable to Communities 

Dr. Tossas mentioned her upcoming Catchment Area Data Conference as the first of its kind to discuss cancer center catchment area analytics. In the last ten years, Dr. Tossas remarked, cancer centers have been pushed from the National Cancer Institute to define the catchment areas where their patients come from as a way to define how they are allocating their money and serving their communities. The conference, in service of this effort, seeks to further support national efforts to develop tools and methods designed to define catchment areas and inform what research, outreach, and clinical services cancer centers perform to hold these institutions accountable. 

Attend the Catchment Area Data Conference – Beyond Definition conference from December 7-9, 2023 in Richmond Virginia: 

Digital Methods Can Improve Community Engagement 

In closing, Dr. Tossas highlighted to value that technology collaborators like Vibrent bring to the table in the digital methods we use to help researchers measure how researchers engage communities and collect the data vital to their projects. Technology, she said, is vital to help researchers improve their methodologies, and to help them share lessons learned on a research software platform like Vibrent’s in a way that is easily systematized, maximizing the benefit of data for many research teams instead of one. Ultimately, she says, technology has the potential to increase the impact that researchers have on communities.  

The post Community Engagement Paves the Way for Reducing Health Disparities in Cancer Research: An Interview with Dr. Katherine Tossas  appeared first on Vibrent.