Trust in Science and Healthcare: A SABCS 2021 Special Session

Addressing Disparities and Building Trust in Science and Healthcare

Imagine walking along a lakefront and coming across a fish, dead on the shore. Your first reaction is likely to wonder about that fish: What was wrong with the fish that caused it to die? Then, imagine coming across hundreds of dead fish on the shore. Your thought would likely change to a systemic one: What’s wrong with that water to cause all of those deaths?

During the Special Session on Trust in Science and Healthcare at the San Antonio Breast Cancer Symposium (SABCS), panelist Deborah Stroman, PhD, shared that image as a metaphor. In a country where Black women with breast cancer have higher mortality rates than white women, she said, we must continue to ask the big, difficult questions: What’s wrong with our system of healthcare that contributes to these disparities? And how can we take steps to overcome them?

“I believe that it is very, very important for us to examine our systems and institutions, certainly healthcare,” said Dr. Stroman, the Director of Diversity, Equity, and Inclusion in Research Programs at the University of North Carolina Gillings School of Global Public Health in Chapel Hill. “It is important for us to be patriotic and to be critical lovers of our systems and institutions.”

For three hours on Dec. 7, speakers and panelists addressed the causes of distrust in healthcare that lead to disparities in care, as well as potential solutions.

“We have to be interested in something that is greater than ourselves. It’s about that connectedness to one another. That is what the session embodies today: coming together, advancing health equity,” said Lori Wilson, MD, Chief of Surgical Oncology at Howard University Hospital in Washington, D.C. “Every one of the 281,000 women who will be diagnosed with breast cancer this year is unique – and they deserve equitable care,” she said, referencing the projected number of women in the U.S. who were diagnosed in 2021.

Building Trust Through Open, Two-Way Communication

Panelists cited patient distrust of healthcare systems as a major contributing factor to care and outcome disparities. Trust can begin – or end – with how clinicians communicate with patients.

In her research to increase enrollment in clinical trials, Dr. Wilson studied ways to improve clinician-patient communication. She found that checking in with patients in a conversational manner, asking them how they are, and giving them an opportunity to share their stories – even before asking them to discuss their medical information – led to greater patient satisfaction and trust. In addition, Dr. Wilson said that this tone led to more patients following through on the steps their doctors recommended. The results extended far beyond clinical trial participation and into everyday care. When providers in the study communicated in this way, patient satisfaction surveys “went through the roof,” she said.

“We stepped toward a conversational style with our patients, and what we noticed was that we were able to establish stronger trust in our relationships,” Dr. Wilson said. “What we found was that the greater the respect [the patient felt], the greater the trust… We were able to establish a new style that showed them how we wanted to communicate with them and how we wanted to listen to what they had to say.”

The effects of trust earned, and trust denied can last for generations. Patient advocate Ashley Dedmon, MPH, of the Tigerlily Foundation recalls that her mother enrolled in a clinical trial when she had cancer decades ago. “We were very fortunate and blessed to have a positive interaction with her medical team, who answered her questions and who spoke to her in lay language. While my mom had a doctoral degree in education, that’s a different discipline. They were able to answer her questions, my dad’s questions, and my questions,” she said. Years later, Dedmon, too, would become a breast cancer patient. She entered into relationships with her care team on a positive, trustful note. Dedmon said she knows that if her mom had faced racism or implicit bias like so many Black patients face, it would have affected her care as well. “That experience would’ve carried down to me.”

Supporting Patients’ Biggest Needs

To develop therapies that are effective for all types of people, all types of people need to join clinical trials. Yet clinical trial participants are not representative of the general population. One study showed that people who have household incomes below $50,000 are less likely to be part of a cancer clinical trial than people who make more than that.

Barriers to participating in a clinical trial can include childcare costs, transportation, and hotel accommodations, as well as lost wages from time taken off from work. Another factor is language barriers, which often exist due to the lack adequate translation services in many healthcare settings. If the costs of an industry-initiated clinical trial can be about $40,000 per patient, panelist Erica Stringer-Reasor, MD, said, she wonders why additional funds can’t be offered to make a clinical trial a feasible option for more people.

“What’s an additional $5,000 to pay for transportation, for food, or for patients to simply be able to ask for the day off work so that they can sit there comfortably in an infusion center for eight or nine hours while we get the important data that we need to predict who is going to be a responder?” asked Dr. Stringer-Reasor, who is an Associate Professor at UAB Medicine in Birmingham, Alabama.

Identifying these barriers and finding ways to overcome them can advance outcomes for people around the world.

“If we could get rid of 10% of the disparities in care, it would be more valuable than some blockbuster drug,” said Eric Winer, MD, of the Dana-Farber Cancer Institute in Boston. “We’re going to get to the point where we have all the drugs but we’re not able to adequately deliver them to the people, and that’s what’s criminal.”

Where They Find Hope

The panelists said they have reason to hope that change is coming – and that some changes are beginning to occur. Dr. Winer said it’s possible that delivering more care in homes and in communities will help reduce some of the disparities in care between major academic hospitals and community centers.

Melissa Davis, a research faculty member in the Department of Surgery at Weill Cornell Medicine in New York, said that she feels hope for the new generation of students who are in undergraduate and graduate schools today. She’s impressed that they’re asking deeper questions about the history and causes of disparities, and that they engage in difficult conversations about what to do next.

“One of the things at my institution that’s happening is the idea of safe space conversations, where not only the minority students but also the patients are engaged in educating the clinicians, educating the educators about why this is very important work and why we need to be more inclusive,” said Davis. “Bridging the gap will come from the seeds that we sow now because we're going to be empowering the next generation of clinicians and researchers to be inclusive and to understand that this is a matter of scientific rigor.”