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NIH Director lays out new community-research initiative during Facts & Faith Fridays

Monica Bertagnolli, M.D., director of the National Institutes of Health, details plan for a new community-engaged research initiative that engages underserved and unrepresented communities in clinical research.

Woman smiling for professional headshot with American flag behind her. Monica Bertagnolli, M.D., is the director of the National Institutes of Health. (Contributed photo)

By Sara McCloskey

Growing up in rural Wyoming, Monica Bertagnolli watched her uncle travel all over the state. It was no surprise to her. The nearest hospital to her family’s ranch was about 100 miles away. Her uncle was a primary care doctor for veterans, driving to clinics spread across the entire state to provide health care.

“They were his responsibility. I just adored him, as my uncle and inspiration,” she said. “He taught me so much about what it is to care for people everywhere.”

That humble, tireless dedication to serving others – who were underserved to begin with – inspired Bertagnolli to become a doctor in the first place.

She recalled these pivotal moments of her journey to becoming the director of the National Institutes of Health to a crowded virtual event led by VCU Massey Comprehensive Cancer Center and faith leaders in late September.

Facts & Faith Fridays connects members of different faith groups across the commonwealth and community members with researchers and clinicians for a monthly conversation about science and religion. Founded during the COVID-19 pandemic, the on-going dialogues recognize how faith leaders are trusted sources of accurate information and act as ambassadors for their communities.

Those on the call were eager to learn more about new initiatives spearheaded by NIH, the primary U.S. agency responsible for biomedical and public health research.

“Our research encompasses the laboratory, the clinic, and it does not stop at the door to the doctor's office because it has to go deep into the community,” Bertagnolli said. “We all know we're all human beings, but all of our communities are beautifully different in wonderful ways – but also in ways that impact what our health can be.”

Putting the community’s needs at the focus of biomedical research

Bringing research to the forefront of underserved communities and among populations that are often underrepresented in biomedical research is at the core of one of the new initiatives NIH is launching this year.

Communities Advancing Research Equity for Health (CARE) for Health aims to integrate research into primary care settings and directly ask residents about what health care topics are the most important to their specific community. Those answers could range from high blood pressure, obesity, or cancer screenings to name a few. From there, NIH will deploy research programs geared towards that community’s needs and will encourage residents to participate in the research.

“We looked at the map of the US and how disparities in health outcomes are distributed. We can see if you live in a different place, if you belong to a different community – you're going to have different health and you're going to actually need a different way of solving your health problems,” Bertagnolli said. “Health is deep as a community and is affected by the community. If [researchers] aren't in these communities, then we're not going to be making progress for them.”

This year, NIH will launch CARE for Health with three pilot research hubs and plan to expand to three more next year. The hubs are located primarily in rural areas, but Bertanolli foresees the new sites to include urban areas too. Each location aims to be diverse, multi-cultural, and also includes people who aren’t often included in biomedical research opportunities.

The important thing, Bertagnolli says, is to build trust within the community and show residents that researchers are listening to their concerns. Bertagnolli recognizes how this approach is different.

“First of all, we have to be humble. [NIH researchers] don't know what's going to work best for your community. And we don't expect or demand people's trust. We have to earn it. It's an act of trust to participate in research,” Bertagnolli said. “I think the way you earn trust is by being there, being present and showing that what you're there to do is to listen to what people need and then help them get it.”

In a similar vein, many of VCU Health’s centers, including Massey Comprehensive Cancer Center, work closely with different communities across Virginia to provide lifesaving health screenings and educational opportunities about medical conditions reported at a disproportionate rate in those areas. Some of these programs include Massey on the Move; a mobile health and wellness initiative, the Chickahominy TRUTH Project, the violence and intervention program Bridging the Gap, Richmond Stroke Smart co-led by the Comprehensive Stroke Center, and VCU Health Pauley Heart Center’s Teach BP initiative in public schools.

Trust as a foundation to encourage participation

Bertagnolli knows firsthand the impact building this trust can have on patients. About six weeks into her role as director of the National Cancer Institute, an agency that coordinates cancer research programs under NHI, Bertagnolli was diagnosed with breast cancer.

After chemotherapy, surgery, and radiation, she says her prognosis is “wonderful” and she’s “incredibly well.”

“Why am I doing so well? It's because of the work that was done by the National Cancer Institute over many, many decades and even more important than that – it's because of more than 140,000 women who agreed to be in cancer clinical trials for the kind of breast cancer I had,” she said. “I just can't tell you how actually living this myself has made me so profoundly grateful to those women who had the courage and generosity to deliver for me the treatments that have been so successful.”

Care teams and leadership of Massey Comprehensive Cancer Center recognize the role faith-based groups have in building this trust to learn more about health care and clinical trials, particularly among members of our community who have been historically marginalized in medical care and research.

Robert A. Winn, M.D., director and Lipman Chair in Oncology at Massey, asked Bertagnolli how faith communities can help in rebuilding trust and supporting the work of NIH.

“Once we get in [your community], we want to work together. Part of this is figuring out how that [relationship] can happen in a sustained and really thoughtful way as part of these pilot phases for CARE for Health,” Bertagnolli said. “The other thing about trust is, it can't be one and done. It's got to be every single day. You have to make sure that we're there and have an enduring relationship.”

In closing, Winn noted that he hopes this event was the beginning of a budding relationship with Massey, VCU Health and Bertagnolli’s work with NIH.

“I just received in my messages from others on this call that quote, “We are going to do more than pray for you, just tell us how we can help.” That’s what this group is all about,” Winn explained.

Faiths and Faith Fridays is co-founded by community leaders Rudene Mercer Haynes, Rev. F. Todd Gray, and Winn. It continues to serve the community under the leadership of its founders, as well as Rev. Dr. Herbert Ponder, Arnethea Sutton, Ph.D., Rev. Dr. Jessica Y. Brown, LCP, and Rev. Rachel Pierce M.A.