Following the people and events that make up the research community at Duke

Category: Medicine Page 1 of 18

The COVID-19 ‘Endgame’ Depends on Where You Live

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In February of 2020, no one could have fathomed that the very next month would usher in the COVID-19 pandemic – an era of global history that has (to date) resulted in 5 million deaths, 240 million cases, trillions of dollars lost, and the worsening of every inequality imaginable.

And while scientists and governments have worked together to make incredible advances in vaccine technology, access, and distribution, it goes without saying that there is more work to be done to finally put the pieces of an exhausted global society back together. On Tuesday, October 12th, the Duke Global Health Institute (DGHI) brought together three leaders in global health to discuss what those next steps should be.

The panel discussion, which was moderated by Dr. Krishna Udayakumar of the DGHI, was titled “The COVID-19 Endgame: Where are we headed, and when will we get there?” The panelists were Dr. Ann Lindstrand, who is the World Health Organization’s unit head for the Essential Program on Immunization; Dr. Ayoade Alakija, who is the co-chair of the African Vaccine Delivery Alliance and founder of the Emergency Coordination Center in Nigeria; and Alberto Valenzuela, who is the Executive Director of the Pan American and Parapan American Games Legacy Project.

Dr. Ayoade Alakija
Dr. Ann Linstrand
Alberto Valenzuela

Dr. Lindstrand began by setting the stage and highlighting what are undoubted successes on a global level. 6.5 billion doses of the vaccine have been administered around the world, and the vaccines have impressive effectiveness given the speed with which they were developed. Yet undergirding all of this is the elephant in the room that, sitting in a 1st-world country, we don’t think about: high-income countries have administered 32 times more doses per inhabitant compared to low-income countries.

Graph from Dr. Ann Lindstrand

This vaccine inequity has been exacerbated by already weak health security systems, vaccine nationalism, and lackluster political commitment. And while the WHO is slated to enormously ramp up supplies of vaccines in Q4 of 2021 and Q1 of 2022, it doesn’t mitigate the damage to the socioeconomic welfare of people that COVID-19 has already had. Dr. Lindstrand outlines the three waves of socioeconomic impact we will see, but expressed concern that “we’re already beginning to see the first wave pan out.” 

Diagram from Dr. Ann Lindstrand

Dr. Alakija took this discussion a step further, asserting that COVID-19 is poised to become the disease of low-income countries. “If you’re living in the US or EU,” she remarked, “You’re heading into the ‘Roaring 20s’. If you live in the Global South, COVID-19 is going to become your future.”

To this point, Dr. Alakija emphasized that the only reason this is the status quo is because in her eyes, the world failed to do what was right when it should have. In her home country of Nigeria, she highlighted that out of a population of 210 million people, 5.1 million people have received the vaccine – and of those 5.1 million, just 2 million — one percent — have been double-vaccinated. “It really is a case of keeping those down further down, while giving booster doses to those that have already been vaccinated,” she said. “We don’t have diagnostic data, so people are slipping underwater and the world has no idea.”

It’s worth noting that Nigeria houses some of the megacities of the world, not just in the African continent. So according to Dr. Alakija, “we don’t solve this with a medical lens, we solve this with a whole-of-society lens.” We must, she argued, because in an interconnected world, no one exists in isolation.

Alberto Valenzuela’s work is a great example of this. In 2019, his team led organizing efforts for the Pan American Games in Lima, relying on extensive partnerships between public organizations and corporations. In 2020, though, as the world shifted, the government called on the team to transition into something much different – COVID-19 relief efforts in the country.

The results are staggering. In just 5 weeks, the Pan American and Parapan American Games Legacy Project built 10 hospitals in 5 regions of the country. The implementation of 31 vaccination centers throughout the country resulted in a tripling of the number of people vaccinated per day in Lima. To him, this work “proves what’s possible when private and public sectors merge.” In other words, remarkable things happen when all of society tackles a societal issue.

Slide from Alberto Valenzuela

So where do we go from here? Perhaps the biggest thing that stood out was the need to empower low-income countries to make decisions that are best for them. In Dr. Alakija’s words, “we need to lose the charity model in favor of a partnership model.” Dr. Lindstrand pointed out that there’s a deep know-how in the Global South of how to roll out mass-vaccination efforts – but only when we “lay down our organizational hats” can we move to what Dr. Lindstrand termed “more coordination and less confusion.” Valenzuela emphasized the need to integrate many sectors, not just healthcare, to mobilize the COVID-19 response in countries. But above all, Dr. Alakija said, “there will be no endgame until we have equity, inclusion, and health justice.” 

Post by Meghna Datta, Class of 2023

Deep Conversations Put the ‘Care’ in Healthcare

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The Duke Medical Ethics Journal (DMEJ) is a golden opportunity to listen to the ways the world around me hurts and heals. It means asking questions – who is being marginalized in my communities? Where is the injustice in my community? What can I do about it? And when these questions feel too big and too heavy, DMEJ means having a community of mentors, friends, and soul-strengtheners to ask the questions with me. Some of my most cherished experiences at Duke since freshman year have been those rooted in exploring the humanities.

Engaging with the field of ethics through the Kenan Institute of Ethics Living Learning Community as well leading the Duke Medical Ethics Journal (DMEJ) has given me a strong appreciation for the utilization of humanities in healthcare.

Before I saw the Spring 2021 DMEJ edition come together, I never realized how deeply identity could influence health. I had always thought of peoples’ identity in terms of cultural identity, not enough in terms of fertility or neurodiversity, until I read the pieces written by my fellow DMEJ writers. I realized more than ever that healthcare at its deepest level is not just about the biomedical model but it’s also about care, care for the values the lives of its practitioners and patients.

COVID-19 has also naturally brought up questions on the importance of mask-wearing, social distancing, and now, vaccinating. Though most students interested in entering the healthcare field typically fall on one side of the argument, it is safe to say that all of us had to take up more responsibility for ourselves and for others. What does it take to do what is right? The ethics (and effort!) surrounding this responsibility makes for deep conversations puts the “care” in healthcare. And these deep conversations are what DMEJ is all about.

Our upcoming issue, winter 2021, will be about the post-covid era. What does a return to normalcy even mean in an age where normal has been changed forever? And two of our bloggers have already written deeply affecting pieces on post pandemic mental health. To stay up to date on what DMEJ is up to, subscribe to our listserv. We’re always looking for more voices to join our conversation. 🙂

Guest post by Sibani Ram, Class of 2023

The Duke Dentist and her Research: Saving Children’s Teeth, One Tooth at a Time

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Walking into our small meeting room with green scrubs and a white lab coat on, our special guest set her bag down in the front and stated “I fixed 60 teeth today and haven’t sat down since this morning.” To us, it sounds like a nightmare, but to Dr. Martha Ann Keels, working in her clinic and conducting dental research is a dream come true. 

Born and raised in North Carolina, Dr. Keels has kept her roots as she studied here at Duke. As a Duke undergrad, she received her bachelor’s degree in Chemistry and a minor in Art History, later choosing to become a pediatric dentist at UNC. It wasn’t long until she returned back to Duke to volunteer at Duke’s Children Hospital, and in 1986, she became the first pediatric dentist to get privileges to practice at Duke. She continues to run her own clinical practice alongside Duke Health System to this day, working for over 30 years!

“I get to feel the satisfaction that something I used my hands for helped alleviate pain in children,” Keels said. “I also get to watch them grow as they come in over the years. It feels super rewarding.”

With her passion and dedication, not only does she help those that enter her office, but she also conducts research on the side, wanting to help dentists all over.

Dr. Keels currently has her hands dirty with a major research project she has been working on for the past nine years. According to the National Institute of Dental and Craniofacial Research, 42% of children between the ages of two to eleven years old have at least one cavity in their primary teeth, and 23% of those children are untreated. With how high these numbers are, she and a group of other researchers are trying to develop tools that allow pediatricians and pediatric dentists to be able to identify high risk factors of cavities in children and care for them before they do occur; tools like questionnaires, surveys, and ‘top 5 predictors…’.

Table of percentages of children with cavities corresponding to age, sex, race, and poverty (National Institute of Dental and Craniofacial Research)

By observing a group of 1,300 children ever since birth, they have been analyzing all aspects of each child: collecting saliva, looking at biofilm (more commonly known as plaque), physical deformities in their teeth, and even social factors like parents’ dental experience. 

Despite the children still being fairly young, Dr. Keels reveals that a surprising amount of information has been found. “No one has ever looked at tight teeth– when your teeth are closely spaced– but we are seeing that it puts a child at high risk of cavities,” Keels said. She also adds that they have also begun to identify which types of bacteria help with reducing chances of getting a cavity, as well as bacteria that bring a high risk of creating a cavity.

 This also goes hand in hand with the microbiomes in our mouths. Dentists first believed that the microbiomes of the child’s caregiver affected the child’s microbiome, in the sense that their microbiomes would be similar from the beginning. Dr. Keels’s study says otherwise. It’s being shown that a child’s microbiome starts off as its own, unique microbiome, and it is over time that it begins to become similar to their caregiver’s microbiome.

With the vast amount of information already collected, Dr. Keels and her team continue to persevere, now wanting to push the study for another five more years. They want to start working with adolescents, wanting to also analyze mental states and how that might affect their dental hygiene and risks of cavities. 

Maybe in the near future, as you speak to your dentist at your next appointment, and they bring up a list of risk factors for cavities, who knows? That list or table could be coming from the one and only Dr. Martha Ann Keels.

Post by Camila Cordero, Class of 2025

Introducing: The Duke Space Initiative

NASA

Engineers, medical students, ecologists, political scientists, ethicists, policymakers — come one, come all to the Duke Space Initiative (DSI), “the interdisciplinary home for all things space at Duke.”

At Duke Polis’ “Perspectives on Space: Introducing the Duke Space Initiative” on Sept. 9, DSI co-founder and undergraduate student Ritika Saligram introduced the initiative and moderated a discussion on the current landscape of space studies both at Duke and beyond.

William R. & Thomas L. Perkins Professor of Law Jonathan Wiener began by expressing his excitement in the amount of interest he’s observed in space at Duke. 

One of these interested students was Spencer Kaplan. Kaplan, an undergraduate student studying public policy, couldn’t attend Wiener’s Science & Society Dinner Dialogue about policy and risk in the settlement of Mars. Unwilling to miss the learning opportunity, Kaplan set up a one-on-one conversation with Wiener. One thing led to another: the two created a readings course on space law — Wiener hired Kaplan as a research assistant and they worked together to compile materials for the syllabus — then thought, “Why stop there?” 

Wiener and Kaplan, together with Chase Hamilton, Jory Weintraub, Tyler Felgenhauer, Dan Buckland, and Somia Youssef, created the Bass Connections project “Going to Mars: Science, Society, and Sustainability,” through which a highly interdisciplinary team of faculty and students discussed problems ranging from the science and technology of getting to Mars, to the social and political reality of living on another planet. 

The team produced a website, research papers, policy memos and recommendations, and a policy report for stakeholders including NASA and some prestigious actors in the private sector. According to Saligram, through their work, the team realized the need for a concerted “space for space” at Duke, and the DSI was born. The Initiative seeks to serve more immediately as a resource center for higher education on space, and eventually as the home of a space studies certificate program for undergraduates at Duke. 

Wiener sees space as an “opportunity to reflect on what we’ve learned from being on Earth” — to consider how we could avoid mistakes made here and “try to do better if we settle another planet.” He listed a few of the many problems that the Bass Connections examined. 

The economics of space exploration have changed: once, national governments funded space exploration; now, private companies like SpaceX, Blue Origin, and Virgin Galactic seek to run the show. Space debris, satellite and launch junk that could impair future launches, is the tragedy of the commons at work — in space. How would we resolve international disputes on other planets and avoid conflict, especially when settlements have different missions? Can we develop technology to ward off asteroids? What if we unintentionally brought microorganisms from one planet to another? How will we make the rules for the settlement of other planets?

These questions are vast — thereby reflecting the vastness of space, commented Saligram — and weren’t answerable within the hour. However, cutting edge research and thinking around them can be found on the Bass Connections’ website.

Earth and Climate Sciences Senior Lecturer Alexander Glass added to Wiener’s list of problems: “terraforming” — or creating a human habitat — on Mars. According to Glass, oxygen “isn’t a huge issue”: MOXIE can buzz Co2 with electricity to produce it. A greater concern is radiation. Without Earth’s magnetosphere, shielding of some sort will be necessary; it takes sixteen feet of rock to produce the same protection. Humans on Mars might have to live underground. 

Glass noted that although “we have the science to solve a lot of these problems, the science we’re lagging in is the human aspects of it: the psychological, of humanity living in conditions like isolation.” The engineering could be rock solid. But the mission “will fail because there will be a sociopath we couldn’t predict beforehand.”

Bass Connections project leader and PhD candidate in political science Somia Youssef discussed the need to examine deeply our laws, systems, and culture. Youssef emphasized that we humans have been on Earth for six million years. Like Wiener, she asked how we will “apply what we’ve learned to space” and what changes we should make. How, she mused, do prevailing ideas about humanity “transform in the confines, the harsh environment of space?” Youssef urged the balancing of unity with protection of the things that make us different, as well as consideration for voices that aren’t being represented.

Material Science Professor, Assistant Professor of Surgery, and NASA Human System Risk Manager Dr. Dan Buckland explained that automation has exciting potential in improving medical care in space. If robots can do the “most dangerous aspects” of mission medical care, humans won’t have to. Offloading onto “repeatable devices” will reduce the amount of accidents and medical capabilities needed in space. 

Multiple panelists also discussed the “false dichotomy” between spending resources on space and back home on Earth. Youssef pointed out that many innovations which have benefited (or will benefit) earthly humanity have come from the excitement and passion that comes from investing in space. Saligram stated that space is an “extension of the same social and policy issues as the ones we face on Earth, just in a different context.” This means that solutions we find in our attempt to settle Mars and explore the universe can be “reverse engineered” to help Earth-dwelling humans everywhere.

Saligram opened up the panel for discussion, and one guest asked Buckland how he ended up working for NASA. Buckland said his advice was to “be in rooms you’re not really supposed to be in, and eventually people will start thinking you’re supposed to be there.” 

Youssef echoed this view, expressing the need for diverse perspectives in space exploration. She’s most excited by all the people “who are interested in space, but don’t know if there’s enough space for them.”

If this sounds like you, check out the Duke Space Initiative. They’ve got space.

Post by Zella Hanson

Trust-Building, Re-Visited History, and Time Pertinent to Achieve Health Equity for Black Americans

Along with being a beautiful person and leading a productive life, Henrietta Lacks is the mother of modern medicine. Her scientific child was born without Henrietta’s consent through the clinical breakthroughs and medical miracles achieved with the help of her cervical cells – HeLa cells – stolen without her knowledge when she sought healthcare. Ironically, the same treatments developed from the cells of this Black woman are inaccessible for many Black Americans contemporarily. Though Ms. Lacks passed away from cervical cancer at the premature age of 31, her unique cells have become immortal. Her story lives on as a pertinent reminder of the importance of building trust between medicine and the Black community. In honor of her birthday, expert panelists met to both celebrate Ms. Lacks and discuss the path forward in trust-building, equity, and reckoning with our history to change the narrative of healthcare for Black Americans.

The panel honored Henrietta Lacks through discussion of the path forward for biomedical research and Black communities. The panel was hosted in August in remembrance of Ms. Lacks’ birthday on August 1st.

The panel, which took place on Tuesday, August 31, began as a conversation between Nadine Barrett (Ph.D.), Robert A. Winn (M.D.) and Vanessa B. Sheppard (Ph.D.). Among their many other titles and positions, Barrett is Director, Center for Equity in Research, Dukev CTSI and Associate Director of Equity, Community and Stakeholder Strategy, Duke Cancer Institute, Dr. Winn is the Director of the Virginia Commonwealth University (VCU) Massey Cancer Center, and Sheppard is the Associate Director of Community Outreach Engagement and Health Disparities at VCU Massey Cancer Center. The trio were joined by Reuben Warren (D.D.S., M.P.H., Dr. P.H., M.DIV.), Director of Tuskegee University’s Bioethics Center, along with a handful of other contributors including Veronica Robinson – Henrietta Lacks’ great-granddaughter and a registered nurse who represents the Lacks family on the NIH panel that reviews applications to conduct research using the HeLa genome.

A screenshot of panelists who took part in Tuesday’s conversation.

Winn began by referencing the U.S. 1932 public health service study that took place in Tuskegee, Alabama. The experiment exploited Black men in Tuskegee when an effective form of treatment for syphilis was discovered 15 years into the study but withheld from participants “to track the disease’s full progression.” In 1972, 40 years after the study began, it was the associated press, not the scientific community that finally led to the experiment’s demise and the issue of an apology from the U.S. President.

As Warren pointed out, the issue with the study was less about the treatment and more about the dishonesty, the falsifying information, and lies. “Stop calling them poor, stop calling them all sharecroppers,” Warren said of the Black men who participated in the study, “They were far more than that.” “[The study] was an issue of trust, not an issue of ignorance,” he continued. Unfortunately, when talking about this story, Winn said that Black Americans “don’t always talk about the power of us standing up and saying not again.

Bioethics violations have been a continuous part of the biomedical research enterprise in the U.S., and race and racism have been part of scientific inquiry, which continues to be of great concern, Warren said. Often, rather than putting preventative protections in place, bioethics regulations have come as a reaction to extreme violations of justice. Thus, Warren laid out a central theme of the panel that “You build trust by making yourself trustworthy and that takes time.” Rather than initiating transactional research with Black communities when the scientific and medical community needs something, Warren offered that they should start when they want to help with something.

Dr. Rueben Warren presenting examples of bioethics violations in the history of biomedical research, with most examples stemming from the United States

As Sheppard said, “[Black people] have earned a mistrust” for medical communities. This is largely hinged on Barrett’s argument that the American systems from health to education to criminal justice “are working as they were designed” – to ensure that the very inequalities that exist today came to be. Using the analogy of a marathon, Barrett said while white men in the U.S. started the race 450 years ago, Black men and women only began running this race hundreds of years later. “Those who start the race are going to…ensure that they thrive,” Barrett said. This has led to Black people dying disproportionately from often treatable diseases, Sheppard said, continuing to add that these sorts of disparities were front and center for the world to see during the COVID-19 pandemic.

In the creation of our structural inequalities, the system created “two bookends: Black and white.” But there has to be a narrative that keeps this story alive. “In order to create the change, we have got to do the work to change the narrative,” said Barrett.

Nadine Barrett (Ph.D.), Director of Health Equity and Disparities at Duke Cancer Institute

Robinson pointed to the importance of history, paralleling Warren’s comments that in focusing on health equities we are fully focusing on the future in a way that ignores the past and does not deal with “what really brought us into health disparities” in the first place. Robinson said that we “can no longer sweep [conversations on the historical injustices of medical racism] under the rug.” She continued to say that the reason why Tuesday’s conversation and the ongoing dialogue that is sure to follow is so powerful is because “we are no longer victims in our own legacies” by taking over conversations at the table rather than being the topics of discussion at the table.

Mistrust in the Black community for systems of medicine and healthcare are based on hundreds of years of action. Hesitancy – from Covid-19 vaccinations to participation in clinical trials for cancer research – amongst Black Americans “aren’t us saying no,” said Robinson, “We’re saying something happened.” Sharon Ribera Sanchez, Founder-Director of Saving Pennies 4 A Cure, is a cancer survivor and advocate for people of color to engage in clinical trials because of the difference they can make in medical developments that draw on more diverse and robust data.

But there is a bigger conversation than just having more Black folks take place in research and clinical trials, Winn said. “How are you going to look at my biology without looking at my history?” he asked, referencing the genetic implications of environmental conditions and stressors from socially constructed race that impact DNA.

An image of HeLa cells

The dialogue, which was opened and closed with a prayer, also spoke to the importance of establishing regular, ongoing, transparent relationships between the Black faith community and the medical community. This should happen, not just in times of crisis, because “mass hysteria is prime for miscommunication,” Ralph Hodge, pastor of the Second Baptist Church in South Richmond, Virginia, said.

“Today was a big way of us looking back at the past, looking at where we are at now, and moving forward to the solutions,” said Barrett. This comes by letting communities know that we care, said Winn, along with “doing things with our communities, not through them.”

A key factor in deconstructing this issue and achieving health equity is time. Time to reflect on the past in order to avoid reliving it; time to generate innovative solutions to the problems at hand; and time to invest in Black communities – to learn from them, support them, and earn their trust not because they can offer science something, but because science has something to offer them.

Post by Cydney Livingston

Black Americans’ Vaccine Hesitancy is Grounded in More Than Mistrust

Covid-19 is considered a “general pandemic,” but its impacts have been disproportionate along the lines of race and ethnicity. Though vaccines may serve as our best chance to put an end to Covid, the problem of vaccine hesitancy amongst Black people in the U.S. is particularly pervasive and grounded by more than simple mistrust.

Gary Bennett (Ph.D.) discussed the issue of complex determinants of vaccine hesitancy among Black Americans Monday, April 5. Bennett is a Professor of Psychology, Neuroscience, Global Health, and Medicine at Duke, as well as director of Duke Digital Health and Vice Provost for Undergraduate Education.

Gary Bennett, Ph.D.

“At the end of the day, we are dealing with an issue that demands pragmatic attention,” Bennett said, “How do we get shots in arms?” It turns out, the answer is quite complex and historically confounded.

While Black people have experienced much higher burdens from Covid-19 despite contracting the disease at a similar rate to whites, they have been disproportionately vaccinated at lower rates than white people.

“Access matters and it matters a lot,” Bennett said. One clear example of decreased access for Black Americans is that fewer vaccination sites are located in areas with high concentrations of Black people.

However, Bennett said, access does not simply equal place. “How much friction are you creating in this process?” he prompted, pointing to examples of complicated registration systems, inadequate public transportation to vaccine sites, or overall distance from a location. All of these factors already limit who is able to access vaccinations without the added influences of reduced vaccine uptake due to vaccine hesitancy.

A slide from Dr. Bennett’s presentation which outlines the plethora of impactors on access.

Vaccine hesitancy was listed by the World Health Organization as a top 10 global threat in 2019, when vaccines were preventing 2-3 million deaths per year in the pre-Covid era. Though Bennett said that vaccine hesitancy “has been with us for a long time,” there “are real consequences” to continued reluctance and refusal to get vaccinated with heightened risks due to the nature of the pandemic.

Bennett said that many claims around hesitancy blame communities for their inability to access vaccines, but this fails to consider or to change the underlying behaviors that drive hesitancy. Bennett outlined these underlying drivers as 1) mistrust, 2) social norms, and 3) understandable uncertainties.

A slide from Dr. Bennett’s presentation showing the unequal distribution of vaccination sites in Atlanta GA in predominantly white areas.

“It’s not just mistrust of the medical system, it’s mistrust of institutions,” Bennett said, “There’s a lot of reasons for [Black people] to mistrust institutions.” The murder of George Floyd stands as one poignant contemporary example, but “Tuskegee [still] looms large in the minds of Black Americans.” The Tuskegee experiment exploited 600 Black men working as sharecroppers who had syphilis by knowingly withholding treatment and simply seeing what happened to their bodies as a result of the disease for over 40 years.

This experiment was not the first of its kind: Whole body radiation was tested on Black people. Fistula surgery was developed on enslaved Black women by the “father of modern gynecology.” The immortal cells of Henrietta Lacks, a Black woman, have been used far and wide to advance science after a sample of her cancerous cervix was unknowingly stolen from her. Modern studies have also shown how different implicit biases of Black patients shape their treatment outcomes due to skewed physician perceptions.

The capital riot, the murder of George Floyd, and the Jim Crow Era all exemplify the pervasive institutionalized racism that erodes Black trust in U.S. institutions of all kinds.

Our social networks are also vitally important to influencing our feelings about receiving the Covid vaccine. In Black communities, Bennett said, fewer people in their networks have gotten vaccinations and those who have received vaccines are less vocal about it leading to a collective lack of interest in receiving vaccinations.

These two factors, paired with understandable uncertainties about the side effects of the vaccine or potentially getting Covid itself, generate the need to change our approaches to vaccine hesitancy and increased uptake amongst Black communities in the U.S.

White people have been disproportionately vaccinated over all other racial/ethnic categories in the U.S.

To do this we need to lead with empathy and appreciate the fact that changing attitudes towards vaccines is a process. “Shaming people is bad,” Bennett said. “Stigmatizing people will actually lead to the converse of what we expect.”

Over time, we can work to correct misconceptions, contextualized uncertainties, and share stories rather than statistics to push people further from vaccine refusal and closer to vaccine demand.

And when more Black Americans are ready, “vaccination should be an easy choice.” By implementing opt-out policies, rather than opt-in and by taking more direct actions like making vaccination appointments for people, Covid vaccines may indeed be the key to ending the pandemic – in an equitable and proportionate way.

Post by Cydney Livingston

A Patient’s and Doctor’s Perspective on Narrative Medicine

When asked about the process of writing her memoir, Dana Lorene Creighton paused in thought.

“It’s like spilling your guts to a lined composition notebook,” she said.

On Tuesday, March 30th, Creighton was joined by Dr. Sneha Mantri, her neurologist at Duke and director of the Trent Center’s Program in Medical Humanities, for Narrative Medicine: A Patient’s Perspective – a conversation about the impact of narrative medicine and the journey to her memoir, A Family Disease: A Memoir of Multigenerational Ataxia.

Creighton, who has an MS in exercise physiology and has spent her career involved in clinical research and community health at both UNC-Chapel Hill and Duke, has spinocerebellar ataxia, a hereditary neurodegenerative condition characterized by a lack of muscle coordination. The illness is commonly visible through slurred speech, stumbling, falling, and incoordination due to damage to the cerebellum – the part of the brain that controls muscle coordination.

As Creighton described, prior to writing her book in her late forties, she hadn’t successfully communicated to anyone the impact of ataxia on her life. And so, her memoir was organically born, but as Creighton says, “it was hard for me to type as fast as I was thinking, and that lasted for several months.”

It took Creighton a couple of years just to write the foundation of the book, which draws on neuroplasticity research, personal memories, and medical records to highlight the importance of storytelling in deriving meaning from illness. She spent the next two years after that re-shaping the arc, drawing on a wealth of her own experiences as well as decades of journaling that had left her with a meticulous set of notes.

As both Creighton and Dr. Mantri emphasized, writing is a deeply cathartic exercise as well as a way to share significant personal narratives. This is especially true in a field such as medicine, where people are so often treated as an illness or statistic rather than a human being.

Narrative medicine was coined as a term by Dr. Rita Charon in her book Narrative Medicine: Honoring the Stories of Illness, to refer to “medicine practiced with the narrative skills of recognizing, absorbing, interpreting, and being moved by the stories of illness . . . . Along with their scientific expertise, doctors need the expertise to listen to their patients, to understand as best they can the ordeals of illness, to honor the meanings of their patients’ narratives of illness, and to be moved by what they behold so that they can act on their patients’ behalf.”

While the recognition of patient and doctor narratives has been around for many years, it was not until fairly recently that narrative medicine emerged as a field of knowledge that doctors could educate themselves in.

Dr. Mantri is familiar with the benefits of narrative medicine from a clinical perspective, holding an M.S in Narrative Medicine from Columbia University and being a leader of various narrative medicine initiatives at Duke, both with doctors and medical students.

According to Dr. Mantri, elucidating these narratives is crucial to understanding that at the end of the day, doctors and patients work to navigate challenges of illnesses with different perspectives. It’s necessary to hear the story of a patient as well as understand the story of a clinician. Only then can doctors work to find moments of alignment between these two perspectives, resulting in care that is more patient-centered.

From the patient perspective, Creighton remarks that a chapter in her book delves into narrative medicine, even though at the time she had no idea what it was. As she learned more about the field, though, it became clear just how integral narrative medicine was to her experience processing and coming to terms with her ataxia. Prior to taking a class on narrative medicine, she assumed that it wouldn’t be a positive experience. But years later, she credits the process of writing her memoir with allowing her to move on, in many ways, from the hold her illness had on her.

Creighton also pointed out that as humans, “we want the same things – to feel heard and to make meaningful connections with others who can potentially help us navigate whatever condition we’re going through.”

To that end, Dr. Mantri and Creighton both referred to several resources that can help people with illnesses find communities of other individuals with the same illness, in order to find the type of solidarity and understanding promoted by sharing experiences. One such resource is PatientsLikeMe, where individuals can ask questions and exchange tips on their specific illness with others going through similar struggles.

PatientsLikeMe

Finally, Creighton was asked about the things she’d like clinicians to know from her perspective as a patient. She described the disconnect that she had often felt, not only with doctors but with therapists and counselors, stemming from a feeling that the help she was offered often did not meet her where she was. In brainstorming ways to mitigate this gap, both Dr. Mantri and Creighton pointed to a need for doctors to focus on a patients’ needs and desires, and a need for patients to advocate for themselves.

As the conversation concluded, Creighton emphasized the importance of being seen as a human rather than a victim of a disease. Spinocerebellar ataxia is neurodegenerative, meaning that symptoms progressively get worse. But as Creighton remarked: “Losing my abilities is going to happen. Losing my abilities doesn’t change the human that I am.”

Post by Meghna Datta

Using Data Science for Early Detection of Autism

Autism Spectrum Disorder can be detected as early as six to twelve months old and the American Academy of Pediatrics recommends all children be screened between twelve and eighteen months of age.

But most diagnoses happen after the age of 4, and later detection makes it more difficult and expensive to treat.

One in 40 children is diagnosed with Autism Spectrum Disorder and Duke currently serves about 3,000 ASD patients per year. To improve care for patients with ASD, Duke researchers have been working to develop a data science approach to early detection.

Geraldine Dawson, the William Cleland Distinguished Professor in the Department of Psychiatry & Behavioral Sciences and Director of the Duke Center for Autism and Brain Development, and Dr. Matthew Engelhard, a Conners Fellow in Digital Health in Psychiatry & Behavioral Sciences, recently presented on the advances being made to improve ASD detection and better understand symptoms.

The earlier ASD is detected, the easier and less expensive it is to treat. Children with ASD face challenges in learning and social environments.

ASD differs widely from case to case, however. For most people, ASD makes it difficult to navigate the social world, and those with the diagnosis often struggle to understand facial expressions, maintain eye contact, and develop strong peer relations.

However, ASD also has many positive traits associated with it and autistic children often show unique skills and talents. Receiving a diagnosis is important for those with ASD so that they can receive learning accommodations and ensure that their environment helps promote growth. 

Because early detection is so helpful researchers began to ask:

“Can digital behavioral assessments improve our ability to screen for neurodevelopmental disorders and monitor treatment outcomes?”

Dr. geraldine DawsoN

The current approach for ASD detection is questionnaires given to parents. However, there are many issues in this method of detection such as literacy and language barriers as well as requiring caregivers to have some knowledge of child development. Recent studies have demonstrated that digital assessments could potentially address these challenges by allowing for direct observation of the child’s behavior as well as the ability to capture the dynamic nature of behavior, and collect more data surrounding autism.

“Our goal is to reduce disparities in access to screening and enable earlier detection of ASD by developing digital behavioral screening tools that are scalable, feasible, and more accurate than current paper-and-pencil questionnaires that are standard of care.”

Dr. Geraldine Dawson

Guillermo Sapiro, a James B. Duke Distinguished Professor of Electrical and Computer Engineering, and his team have developed an app to do just this.

On the app, videos are shown to the child on an iPad or iPhone that prompt the child’s reaction through various stimuli. These are the same games and stimuli typically used in ASD diagnostic evaluations in the clinic. As they watch and interact, the child’s behavior is measured with the iPhone/iPad’s selfie camera. Some behavioral symptoms can be detected as early as six months of age are, such as: not paying as much attention to people, reduced affective expression, early motor differences, and failure to orient to name.

In the proof-of-concept study, computers were programmed to detect a child’s response to hearing their name called. The child’s name was called out by the examiner three times while movies were shown. Toddlers with ASD demonstrated about a second of latency in their responses. 

Another study used gaze monitoring on an iPhone. Nearly a thousand toddlers were presented with a split screen where a person was on one side of the screen and toys were on the other. Typical toddlers shifted their gaze between the person and toy, whereas the autistic toddlers focused more on the toys. Forty of the toddlers involved in the study received an ASD diagnosis. Using eye gaze, researchers were also able to look at how toddlers responded to speech sounds as well as to observe early motor differences because toddlers with ASD frequently show postural sway (a type of head movement).

“The idea behind the app is to begin to combine all of these behaviors to develop a much more robust ASD algorithm. We do believe no one feature will allow us to detect ASD in developing children because there is so much variation”

DR. GERALDINE DAWSON

The app has multiple features and will allow ASD detection to be done in the home. Duke researchers are now one step away from launching an at-home study. Other benefits of this method include the ability to observe over time with parents collecting data once a month. In the future, this could be used in a treatment study to see if symptoms are improving.

Duke’s ASD researchers are also working to integrate information from the app with electronic health records (EHR) to see if information collected from routine medical care before age 1 can help with detection.

Post by Anna Gotskind

The Diversity Problem in Science

With COVID-19 being a fixture of our lives for nearly a year now, science has been a staple in the news. Along with science, though, a long-overdue conversation about the state of race relations in America has taken center stage, which makes diversity in science a critical topic to delve into. COVID-19 has highlighted not only a national crisis in healthcare response, but also longstanding health disparities across racial and socioeconomic groups that have only been exacerbated by the pandemic.

 On Wednesday, January 27, Dr. Gowthami “Gow” Arepally, known for her work as Professor of Hematology at the Duke School of Medicine, led a talk called “The Diversity Problem in Science” that aimed to highlight not only the obvious problems in research but the urgency with which everyone, from the individual to the collective level, should aim to address the problem within their spheres of influence. Dr. Arepally is not only known for her work in the medical school but also as a valuable mentor for colleagues, undergraduates, and high school students — a point that was highlighted as an important way non-URM (under-represented minority) scientists can make a difference.

Gowthami Arepally, M.D. 

Underrepresentation in science starts early, Arepally says. For example, while discrepancies in graduation rates between Black/Hispanic students and their white/Asian peers are not bad in high school, they get progressively worse through college and beyond. In 2016, 18% of degrees nationally were awarded overall in STEM fields — but this number drops to 12% for Black students and 15% for Hispanic students. As of 2015, Black applicants have lower medical school acceptance rates than peer applicants – 34% versus 44% for their white counterparts. And the numbers get worse further into medical school; Black students and Hispanic students each represent less than 6% of medical school graduates, while a staggering 80% of graduates are either white or Asian.

This perpetuates a cycle going into the workforce that discourages young underrepresented minority (URM) students from entering STEM, seeing a lack of role models that look like them. As of 2016, only 39% of full-time faculty at medical schools were female, and a mere 4% of faculty were Black. This results in barriers to NIH research that further hold URM scientists back. Between 1999 and 2012, 72% of NIH awards were given to white scientists and 24% were given to Asian scientists, but only 2.4% of these awards were given to Black scientists.

This is a story that is shocking when told through statistics but is all too familiar, as an experience, for minority students and researchers interested in pursuing careers in the sciences. However, there are concrete ways to counter the problem. As Dr. Arepally pointed out, NIH Diversity Supplements for existing NIH grants can be obtained from the high school to faculty level as an added source of support for URM researchers. Medical societies themselves can be sources of diversity initiatives, such as Dr. Arepally’s society, the American Society of Hematology, which boasts one of the most aggressive minority recruitment initiatives. Within Duke, many pipeline programs exist for researchers to support URM students and new researchers and faculty.

Chart of pipeline programs at Duke

Most importantly, it’s important for individuals to enact change on a personal level. Whether it means educating oneself on underrepresentation, advocating for the advancement of other URM trainees and colleagues, or committing to the success of URM students through pipeline programs, individual steps can add up.

And as Dr. Arepally highlighted, these steps, however small, are important to prioritize. Increasing diversity in medicine, for example, can help address existing health disparities. URM physicians are more likely to address the care of minority populations, while minority patients are more likely to choose URM populations. And the existence of more URM physicians improves the cultural competency of all trainees. Sex diversity, too, has a positive effect on the quality of science in collaborative groups. The impacts of diversity extend to role-modeling for younger students, who may be at a crossroads in terms of determining a future career. In this way, current measures to increase diversity can foster a cycle of more diverse students entering STEM and being supported there, for generations to come.

Diversity in science is not only good for science and scientists, Arepally says, but for all of us. Science should reflect the society it serves, and with more diversity in science, breakthroughs will be applicable and accessible to every person —  not just the majority.

Post by Meghna Datta

Physician-Scientist Takes the Long View and Sets Her Sights High

Dr. Bryan Batch, a Duke endocrinologist and researcher, studies treating metabolic disorders (like diabetes) with non-pharmacological approaches. But, she says, her parents’ medical professions, and the hard work that went into them, resulted in her not wanting to pursue science at all as a child.

Bryan Batch MD

When she took biology in middle school however, it clicked. It didn’t feel like “the slog of math,” she says, because she enjoyed studying life in its different forms. This infatuation with science combined with a love for other people pushed her to pursue medicine.

Now, Dr. Batch focuses on racial disparities. She says that a huge issue with disparities, whether they involve race, poverty, food insecurity, educational opportunity, or health insurance, is that they are often driven by policy. “We are not trained to know how to affect change in policy in medical school — it’s not something we are taught. But I do think if physicians got more involved in politics and policy we would be able to make significant positive impact.”

What she does try to do is adapt to individual patient needs in the moment. Her work at Duke signifies what she, as a healthcare provider, can do within the time spent with patients to interact in the best way possible. For example, she can understand if someone has a literacy issue and adapt her methods of explanation so that their literacy doesn’t hinder their understanding. While it can be challenging for one person to change systemic issues or share lived experiences with people of different backgrounds, Dr. Batch makes every effort to create a comfortable environment where she is able to leave a positive impact.

These impacts have no doubt been affected by COVID-19, which Dr. Batch describes as one of the most challenging experiences in her twenty years of practicing medicine. Although telephone and video conferencing have been available for years, Dr. Batch explains that only now is there a drive to put them to use. “It was like someone came up behind you and just whacked you on the head,” she says — no warning, no time to get organized.

Dr. Batch feels lucky to be in endocrinology, where there is flexibility for remote visits. Yet, even when patients do have the chance to have an in-person visit, some don’t want to. If they do, the physical separation, masks, and face shields create a feeling of distance. Dr. Batch spends much of her clinical time at the Durham Veteran Affairs Hospital, across the street from Duke Hospital, where many hearing-impaired patients have difficulty understanding her words because her mask takes away the ability to read lips.

Dr. Batch says that even after the pandemic has passed, more than 30% of visits may remain over the telephone, which can give patients increased access to their doctors.

The challenges have infiltrated her research too, where now the only people she can bring in are those who need to visit the VA Medical Center for another reason anyway, like going to the eye doctor. Overall, she says, she has been surrounded by phenomenal people who rolled up their sleeves and said “let’s get it done.” Still, it has been exhausting.

The Durham Veterans Administration Medical Center, where Dr. Batch conducts most of her practice.

To her, family is everything, and she tries her best to stay in touch with the people who matter most as a way to get through it all.

Even before COVID-19, Dr. Batch has been intentional about living her life to the fullest and staying true to her core values. If that means rescheduling things at work to be with her kids, she is unapologetic. She chose endocrinology as a specialty in part because it’s very family-oriented, and she feels lucky to have colleagues who understand the flexibility she values. Her ultimate goal is to leave a mark on the world but she also wants her happiness to come from what matters, so she stays close to her big family and lots of friends.

While sacrifices are inevitable in any career, Dr. Batch tries not to make large ones on the homefront. She takes it day by day, week by week, she says, to make it such that “work” and “life” are in harmony as much as possible. It is easy to get caught up and have the years go by, one day realizing that the important people have pulled away.  Dr. Batch is deliberate about making the time for these people, including her two children and husband.

Dr. Batch is a role model for young people, particularly for women of color. She shared an anecdote about her inattentive high school counselor, to whom she went for a signature on her college application list. Seeing Yale, Harvard, and Brown, he told her that she was “reaching too high.” Batch responded, “I’m not here for your opinion on this list. I’m here for you to sign this form..

She ended up at Yale.

She says she had the courage to talk back to the counselor  because her parents instilled the idea of working hard and pushing higher. What matters, she says, is believing in yourself and surrounding yourself with people who believe in you.

 Unfortunately, Batch said, underestimation by others resonated throughout her college, medical school, residency, and fellowship, because she is a woman or because she is Black.

At the end of the day, Dr. Bryan Batch never let other people define her experience but instead allowed her hard work to prove her value and propel her to always reach higher.

Guest Post by Viha Patel, Class of 2021, NC School of Science and Math

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