An informed approach to tuberculosis screening, treatment

Five years after her fellowship at Mayo Clinic, Dr. Sia learned about tuberculosis-related concerns among students — most of whom are immigrants and refugees — at Hawthorne Adult Education Center in Rochester. Several cases of active tuberculosis had been diagnosed, creating an environment of fear and stigma.

Hawthorne serves a large foreign-born population and offers programming such as learning the English language, getting a high school equivalency credential, and starting college. Hawthorne students represent more than 70 languages.

Recent emigration from regions of the world where tuberculosis is endemic elevates the risk of the reactivation of the disease. Despite public health policies and processes for evaluating and treating the disease, Hawthorne students weren't getting tested or treated. Attempts at voluntary TB screening had resulted in very low partic­ipation rates.

Dr. Sia became involved in getting to the bottom of the problem.

"We needed to listen to the affected population and figure out the barriers to testing and treatment," she says.

She and her team received funding from the National Institutes of Health to look into the problem and develop solutions. That meant partnering with the community.

"We approached the situation as research partners with the community, not as a service provider. Our goal wasn't to deliver TB treatment — the public health and healthcare systems do that. Instead, our goal was to determine why the existing system wasn't working well," she says. "To have an effect, you can't always apply what you think you know to a population that may not relate to it. You have to sit down with community members to learn about their experiences and health priorities."

The funding supported the establishment of the Rochester Healthy Community Partnership. Partners include Mayo Clinic researchers, community organiza­tions, medical centers, public health agencies, schools, and universities. The primary aim is to improve health through community-based participatory research, education, and civic engagement.

Community-based participatory research gets community members involved, uses local knowledge to understand health problems and shape interven­tions, and involves researchers and community partners in all aspects of research.

"We've developed an effective community-based research infrastructure and are experienced in designing and carrying out programs with community partners who help identify health priorities in and solutions for their communities," Dr. Sia says. "We have a strong track record of engaging research participants from minority populations who remain underrepresented in clinical trials, programs, and initiatives aimed at improving health among these populations."

An evaluation conducted by the University of New Mexico in 2016 showed that the success of the Rochester Healthy Community Partnership is largely due to continuous and active community leadership and effective resource leveraging.

Dr. Sia's team developed a community-based participatory research approach for Hawthorne. The research identified that fear and stigma were barriers to testing.

That knowledge opened the door to talking with families about those concerns.

The team conducted TB screening opportunities at Hawthorne, each preceded by a brief education session in classrooms. Those sessions featured a video that was developed by the partnership. Facilitators described testing procedures, answered questions, and left sign-up sheets in classrooms. Names from the sign-up sheets were shared with the TB clinic to determine those who were eligible for on-site screening.

The discussions created an atmosphere of open dialogue.

More than 618 tests were completed between 2009 and 2017, with 121 positive results. Of those, 101 completed evaluations at the TB clinic. None were determined to have active disease. Seventy-two patients started medication for latent infection at no cost to them.

The intervention has been sustained due to the participatory, adaptable framework the team created, as well as ownership by stakeholders.

"We work with immigrant groups in the community to identify priorities or barriers to health and healthcare and, importantly, work together through research on how to improve," Dr. Sia says. "We created methods to explore this research approach and implement interventions in a participatory manner."

This work is 'a gift'

Over the past two decades, the work by Dr. Sia and the Rochester Healthy Community Partnership has included many other research projects, including obesity prevention and cancer screening.

"My expertise isn't in physical activity, nutrition, and diabetes, but rather is in engaging with communities. We work with community partners and build relationships and trust with them," says Dr. Sia. "Our aim is that our research studies will inform policies and practices to sustain change in public health. We're celebrating 20 years of these efforts in the community — 20 years of developing trust."

This story originally appeared in Mayo Clinic Alumni Magazine.