Reckoning with health’s social context
Why zip codes, culture and support networks matter
Introduction by Nina Bai
As a neuro-oncologist, Reena Thomas, MD, PhD, takes care of patients with brain tumors and metastatic cancers that have spread to the brain — among the toughest cancers to treat. Her patients who are able to enroll in clinical trials for new, experimental therapies tend to have the best chances of survival. But clinical trial participants don’t reflect the diversity of all the patients she sees.
“Unfortunately, as neuro-oncologists we’re often dealing with diagnoses that do not have a cure,” said Thomas, a Stanford School of Medicine clinical associate professor of neurology and neurological sciences. “The truth is, patients in clinical trials do better. There are more lines of treatment available to them beyond the standard-of-care options.”
That means her patients’ prognoses can be influenced by social determinants of health in addition to genetic variations or lifestyle choices.
Social determinants of health, as defined by the federal Centers for Disease Control and Prevention, are the conditions in the places where people live, learn, work and play that affect health and well-being. Income, education, housing, food insecurity, social support and discrimination are just a few examples.
Social determinants of health do not mean that any individual’s health is dictated by their circumstances, but studies on a population level have revealed strong links to all kinds of health issues. They can influence behaviors like smoking, exercise, diet and sleep; increase exposure to pollutants and infectious diseases; and limit the time, energy and resources to access health care.
For Thomas’ patients, for instance, participating in a clinical trial can feel like a full-time job. Trials can be difficult to understand, require numerous visits to the hospital, more oversight, more medications, and more monitoring for side effects to ensure safety. Many patients lack the means of transportation, the support of friends or family, the language skills or simply the time to join a trial.
These socioeconomic factors originate far upstream of the diagnosis itself and are often overlooked in medicine, though that’s beginning to change.
“You can see what’s happening in the river right in front of you, but social determinants of health are what’s upstream,” said David Rehkopf, ScD, associate professor of epidemiology and population health and director of the Stanford Center for Population Health Sciences. “If the river starts to flood, would you only focus on scooping water out of the river in front of you, or would you go and see what the cause of the problem was upstream, and set up a dam or stop the leak?”
Rehkopf and other researchers are looking upstream. He studies how decisions made by governments and corporations, such as tax policy, can influence health.
“If you have a lower level of education, that constrains what kind of job you can have, and that constrains your earning ability, and that constrains where you live, and that constrains where your kids go to school,” he said. “And this cascade of factors can act synergistically together to give people fewer opportunities to be healthy.”
An upswing in research
For as long as population-level data on health have been collected, people have noted the impacts of work and living conditions on health. In the 1700s, studies showed that mortality rates in Parisian neighborhoods varied according to the poverty levels of their residents. By the early 1900s, public health work in the United States had collected data connecting pellagra — a disease caused by a vitamin B3 deficiency — and other diseases to poverty.
In 2008, the World Health Organization published a landmark report on social determinants of health, warning that “social injustice is killing people on a grand scale,” and calling on countries to take action to close the health gap.
More recently, the COVID-19 pandemic’s disproportionate effect on communities of color and the murder of George Floyd at the hands of police have brought more urgent attention to the health implications of socioeconomic inequalities, Rehkopf said. Published research on social determinants of health has increased six fold over the past decade, with a steep rise since 2020.
Studies suggest that such issues outweigh medical care or lifestyle choices in their overall contributions to health. Though researchers who focus on these factors have often faced skepticism, said Rehkopf.
“The first objection was that it’s too difficult to study these kinds of fundamental things in society: If you can’t do randomized trials, then it’s not amenable to scientific investigation,” he said. In the past decade, however, new statistical methods and ways of collecting data have shown that randomized studies are not the only way to make causal inferences.
“The second thing that people say is, ‘Well, we know they’re important, but they’ll never change,’” Rehkopf said. “The work that we and other people have done is to show these things can change over time.”
The federal earned income tax credit that provides tax breaks for people with low to moderate incomes, for example, has dramatically decreased child poverty in the United States and translated to improved health of children and their families, according to Rehkopf.
Clinicians like Thomas are taking into account how nonmedical factors affect their patients’ health. “Understanding that social determinants of health can limit a patient’s ability to consider clinical trials, for example, allows us to attempt to dismantle those barriers, as an institution and as clinicians,” she said.
That includes providing the appropriate educational resources, having conversations around a patient’s nonmedical concerns and recruiting a workforce that reflects the diversity of the patient population.
“Social determinants of health is an area that is underfunded and understudied,” Thomas said. “The reality is, they are some of the most insurmountable challenges that we have facing clinical medicine.”
At Stanford Medicine, a broad array of clinical, research and community initiatives are addressing the challenges and opportunities presented by social determinants of health.
From childhood screening for food insecurity to the first large-scale, nationwide study of LGBTQ+ health, from mobile apps that document health inequities to data sharing for population health research, these programs recognize that health begins outside the doctor’s office.
Index of articles in this report:
- AGENTS OF CHANGE: A medical student program to learn health equity leadership
- SPEAKING THEIR LANGUAGE: A critical need for more Latino physicians
- MAKING CONNECTIONS: Closing the technology gap for disconnected patients
- AFTER THE CURE: Getting follow-up care for childhood cancer survivors
- CITIZEN SCIENCE FOR HEALTH EQUITY: Empowering community researchers
- ARE YOU GOING HUNGRY?: Pediatricians add food insecurity to health checks
- HEALTH DATA ON DECK: An information trove that’s helping to reduce health inequities
- UNCHARTED TERRITORY: Building LGBTQ+ care evidence base
A program for medical students has developed a host of leaders in fighting health disparities
By Emily Moskal
Edo Ighodaro was, and still is, fascinated by the brain, but she felt her studies didn’t capture the complexity needed for well-rounded patient care.
“As a neuroscience undergraduate major, my classes tended to be more focused on the biological aspects to a person’s health,” said Stanford medical student Ighodaro. “But after volunteering at an immigrant community clinic, I decided I wanted to dedicate more time to exploring and studying the other aspects, including environmental and social factors, that could affect one’s health as well.”
While working as a care coordinator for pregnant patients in a Chicago clinic after graduation from college, Ighodaro witnessed socioeconomic factors that can discourage patients from seeking care. She further explored these factors when she entered the Stanford School of Medicine in 2022 and joined its Leadership in Health Disparities Program.
The program began in 1984 as the Early Matriculation Program, developed by professors Fernando Mendoza, MD, and Robert Cutler, MD, and administrator Ronald Garcia, PhD, to empower incoming minority medical students and others who were educationally disadvantaged to tackle health care inequities and obstacles their patients might face.
In 2007, the program opened to all medical students — though many still come from minority populations — and evolved to also teach skills needed to become faculty members or hold other leadership roles in addressing those inequities, said Felipe Perez, MD, the program’s director, who noted that graduates have become leaders at such places as MD Anderson Cancer Center, Harvard University and Johns Hopkins University.
During the summer quarter before medical school begins, the students in the program conduct a research project, take introductory courses in anatomy and clinical skills and participate in sessions to develop leadership skills and understand who they want to be as a doctor.
After the summer, students meet every quarter, join the previous year’s students for social gatherings and attend a two-year leadership seminar series.
“When you’re a minority student entering a medical school, having a cohort of students who are going to have your back is one of the greatest feelings,” said Perez. “When they show up for their first day, they have that group and that support. And I think that sense of belonging is going to help them go further in life.”
The force behind medical student Sofi Vergara’s decision to join the program is her desire to become an agent of change.
“We infiltrate systems of power by training ourselves to enact change from within the communities,” said Vergara, a first-generation immigrant from Ecuador who has experienced poverty and health disparities firsthand as an international low-income student. Like Ighodaro, Vergara was seeking to break out of the lab and into communities.
“Seeing the medical students go through the program, you see them come in eager to change our health care system,” said Perez. “We get to hear their vision of what a better tomorrow looks like.”
Vergara’s research project examined skin color bias in the use of pulse oximeters — devices that clip onto a fingertip to measure the oxygen level in a person’s red blood cells by analyzing light that passes through the finger. Darker skin tones lead to overestimates of the oxygen level, an error that could mean the difference between receiving oxygen therapy or not.
The project doesn’t end with the reporting of scientific results. With health disparities work, you must turn the results into outcomes, she said. “These findings are really not significant if you’re not willing to work with those communities,” said Vergara.
Fatima Al Rashed is another student in this year’s cohort. Her research found that rural areas tend to lack policies to expedite stroke care. She wants to be a neurosurgeon, providing more access to previously underserved populations. But she also wants to raise the profession’s consciousness about disparities.
“It’s a very important topic that applies to all fields of health care,” said Al Rashed.
“All health care professionals should be aware of what disparities they are dealing with within their own fields,” she said.
That, Mendoza said, is the point of the program, which has graduated more than 400 students since 1984.
“We’re not just going to send people back to the communities, which is important,” said Mendoza, professor emeritus of pediatrics. “We’re creating leaders who are going to change medicine. Just think about what it’s going to look like in 20, 30 years from now.”
A critical need for more Latino physicians
By Emily Moskal
A young woman in labor was in crisis and had a crucial decision to make. Her doctors at Lucile Packard Children’s Hospital Stanford had discovered an infection in her placenta, a condition that required an urgent cesarean section. That procedure is most safely conducted with the patient awake and receiving an epidural — a pain-relieving injection of medication near the spinal cord often used during labor. The alternative would be general anesthesia, a riskier choice during a C-section for the woman and newborn.
Yet the patient was hesitant to have an epidural because she, like many women in her native country of Nicaragua, believed the procedure causes paralysis and permanent back pain.
U.S. Latinas in general are 20% less likely to receive an epidural than their white counterparts, and that comes with an increased risk of maternal and newborn death, according to Cesar Padilla, MD, a Stanford Health Care obstetric anesthesiologist.
The woman, an immigrant to the United States, spoke little English, but one of her doctors was Padilla, who speaks Spanish, and he told her of the low risk epidurals pose, especially compared with the larger risks of general anesthesia. She agreed to an epidural, but without a Spanish-speaking doctor who understands the cultural myths, she may have gone without it and had complications like bleeding and heart failure, said Padilla.
“It’s hard not to see your loved ones when you’re dealing with such cases because they are a microcosm of our communities,” said Padilla, whose parents emigrated from Mexico. “I felt elated after her successful delivery. But what if I didn’t have that cultural connection?”
A dearth of Latino physicians
Most Spanish-speaking patients in the United States are not treated by Spanish-speaking physicians. The percentage of U.S. physicians who are Latino has remained roughly the same for 40 years: 6%, despite a rapidly growing Latino population of about 19%. In California, the portion of the population that is Latino is more than double that, according to the U.S. Census Bureau.
To recognize the need for more Latino physicians, Stanford Medicine physicians, students and colleagues launched National Latino/a Physician Day on Oct. 1, 2022. The campaign is the brainchild of Padilla and Stanford Medicine-trained pediatric hand surgeon Michael Galvez, MD, now at Valley Children’s Hospital in Madera, California, who organized the day’s promotion with an alliance of Stanford Medicine Latino physician faculty, Stanford Latino Faculty Advocacy Meetings, founded last year.
The organizers celebrated the day through social media, and more than a dozen health care organizations around the country ran in-person and online events. California Surgeon General Diana Ramos, MD, gave support through a Facebook Live event promoting the day. Southern California Kaiser Permanente organized the largest in-person event, called Super Saturday, in Los Angeles with roughly 200 people.
Padilla said his social media posts garnered more than 14 million views.
The sale of promotional T-shirts by MíMentor, a program dedicated to mentoring Latino pre-medical students and run by the Latinx Physicians of California, played a major role in outreach, with proceeds going to the same program.
At Stanford Medicine, Padilla and incoming obstetric anesthesiology fellow Lydiesther Martinez, MD, will lead courses for their colleagues on talking with Spanish speakers about epidurals. They hope to dispel myths and increase the number of Latinas having epidurals, which makes childbirth safer, according to Padilla. It’s just one way, Padilla said, that Latino physicians can have a positive impact on patient care.
Padilla said that employing, mentoring, training and supporting more Latino physicians is critical.
“Six percent is not enough,” he said. “We’re here, but there needs to be more of us in order for clinics and hospitals to effectively care for our patients.”
Padilla hopes that this year the state will officially recognize National Latino/a Physician Day so more eyes will be on the movement and more Latino physicians will be hired and feel welcomed into the profession, he said.
In rural California, one physician investigates how to get follow-up care for childhood cancer survivors
Today, more than 80% of children with cancer are cured. After months or years of surgeries, chemotherapy and radiation, survivors return to home and school, as their parents draw deep breaths. Instead of illness, kids focus on homework, friends, video games and swimming lessons. They scrimmage with their siblings. They grow up and lead relatively normal lives.
But the phrase “relatively normal” hides struggles. Survivors of childhood cancer face lingering health challenges and need regular checkups to detect late-onset effects of treatment, such as heart and lung problems that emerge years after chemotherapy and secondary cancers linked to radiation exposure.
Upon graduating from cancer treatment, each child is supposed to receive a treatment summary from their pediatric oncologist to guide long-term medical monitoring. The summary includes details such as the original cancer diagnosis, specific chemotherapy drugs and radiation protocols used in treatment, and which medical tests survivors should receive, on what schedule, to look for late side effects.
But when, as part of a recent research project, Stanford Medicine Children’s Health oncologist Stephanie Smith, MD, asked teen and young adult cancer survivors and their parents about these summaries, she learned that many hadn’t looked at theirs in years.
“The vast majority said, ‘All my records are in a backpack, but they just sit there,’” said Smith, an instructor of pediatric hematology-oncology at the Stanford School of Medicine. “Or people would tell us, ‘I don’t know what I would do with a summary if I had one.’”
Smith’s research aimed to identify the medical gaps faced by adolescent and young adult cancer survivors, mostly of Mexican heritage, who live in California’s Salinas Valley, an agricultural region a few hours’ drive south of the Stanford Medicine campus.
“There is a huge gap between what science tells us should happen in terms of their long-term care and what is happening,” said Smith, whose research received funding from a Stanford Maternal and Child Health Research Institute grant program aimed at addressing structural racism.
Making the shift from pediatric to adult medical care can be tricky for anyone, even if they don’t have complex medical needs. These young people also grapple with economic and cultural factors that compound the challenge — which, until now, have gone mostly unrecognized.
“We’re not getting to the most vulnerable people,” Smith said.
Smith conducted the study in concert with Jacob’s Heart Children’s Cancer Support Services, a Watsonville, California-based community nonprofit that assists young cancer patients and their families.
During cancer treatment, Jacob’s Heart meets families’ basic needs with financial assistance, a food pantry, transportation to medical appointments, and family support specialists, who are similar to hospital case managers. Staff members also foster community by offering a summer camp for kids with cancer, frequent social activities, art therapy, and support groups for patients, cancer survivors, parents, siblings and bereaved family members.
The board of Jacob’s Heart recently identified an additional need in its community: supporting childhood cancer survivors as they navigate their long-term medical risks. A mutual colleague introduced them to Smith and they soon began collaborating with her to help close this gap.
In their joint project in early 2022, Smith and her team conducted detailed interviews with seven Jacob’s Heart staff members, 12 cancer survivors and 11 parents, spending up to two hours with each person to get a detailed picture of the difficulties they have faced after completing cancer treatment.
“We realized their cancer history is, in some ways, the least of their concerns,” Smith said. Survivors and families described having unstable housing, financial and insurance barriers, and issues integrating into school after cancer — challenges they often saw as more pressing than medical follow-ups.
They also encountered cultural and language divides: One survivor had to rely on an older sibling who was more fluent in Spanish to bridge a language gap with their mother. She knew the details of the survivor’s early-childhood cancer but spoke less English than her kids.
Families expressed a strong desire to put their children’s cancer behind them, saying things like, “We don’t think about that. It was 15 years ago and my son is well now.” Mexican American family support specialists at Jacob’s Heart told the researchers that this may be partly because the Spanish word “cáncer” carries a strong connotation of death.
“There’s so much stigma and negativity that families’ reluctance to discuss it totally makes sense,” Smith said.
In some cases, families worried that their child missing school for medical reasons could somehow draw attention from authorities that might result in a visit from U.S. Immigration and Customs Enforcement.
“Families are scared of Child Protective Services coming to say, ‘Why isn’t this kid in school?’ for an unexcused medical reason, and then finding an undocumented family member and calling ICE,” Smith said.
“It’s just heartbreaking that this is the undercurrent these families are dealing with and emblematic that there is so much families don’t tell me in clinic visits. If you don’t talk to the community and have partnerships with them, you as a physician actually have no clue what people are dealing with.”
Even those who attended follow-up appointments said they found that cultural and language barriers sometimes kept them from getting information they needed.
“People were really hesitant to question doctors or nurses,” Smith said. “They often assume the doctor knows best, or feel they need to show respect for others, or think they didn’t understand something only because of the language barrier.”
Survivors also described mental-health challenges: lingering symptoms of emotional trauma or depression, worries about sacrifices their parents and siblings made while they were sick, and guilt at surviving when some of the friends they met during treatment did not.
“They said things like, ‘Do I have to become a model person and do something amazing with my life?’” Smith said. “There’s a lot of pressure.”
Tapping the real experts
The project’s next step is to work with survivors and families to brainstorm and test strategies to help. Smith’s expertise in community-engaged research will enable her to measure the impact of these ideas and help Jacob’s Heart staff scale up the things that work.
For instance, having young adult survivors meet with Jacob’s Heart case managers before medical appointments might enable them to brainstorm questions they need answered, as well as strategies to broach their concerns with physicians, Smith said. But that’s her idea; she anticipates that the best concepts will come from cancer survivors.
“We need to bring parents and young adults into the solutions we try to develop,” she said.
Cole Rossi, a 24-year-old student at California State University, Monterey Bay, agreed. Diagnosed with a brain tumor at age 6, Rossi completed cancer treatment at Lucile Packard Children’s Hospital Stanford, with support from the Jacob’s Heart team, in 2004-05. Today, Rossi volunteers with Jacob’s Heart’s summer camps and teen groups.
Though he’s long been cured and will graduate from college in the spring, the aftereffects of Rossi’s diagnosis persist, often in ways that don’t make sense to others. “It’s a bear,” he said, citing, for example, the challenge of getting his professors to understand why his energy levels and memorization skills differ from those of other college students.
Insider knowledge counts when it comes to navigating how to grow up after cancer, he added.
“It’s never over,” Rossi said. “Being someone who has lived through that takes a big toll on you.”
Closing the gap for people without internet access or experience
By Emily Moskal
While many people turned to video chats and social media to help overcome the isolation caused by the COVID-19 pandemic, those without internet access faced growing isolation — from community, health care and other types of much-needed support.
As telehealth became a go-to option for care, many community health organizations ventured into the unfamiliar territory of trying to build sustainable and equitable high-quality virtual care experiences for historically marginalized communities.
To aid that effort, one of Stanford Medicine’s community-based faculty members at Roots Community Health Center, Tem Woldeyesus, MD, a clinical assistant professor at Stanford School of Medicine, co-developed a screening tool to identify needs and challenges in using telehealth services. This is one of several Stanford Medicine initiatives that aims to close the digital divide for patients.
During academic year 2021-22, volunteers screened by phone more than 100 Roots clinic patients, primarily in East Oakland, California, to assess their readiness for telehealth and barriers to using telehealth-enabling devices — for example, lack of access to a computer or internet connection.
The screening survey found that 72% of participants had reliable internet access; 80% had access to a video-capable device; and 67% felt comfortable using video calling platforms.
Before the survey, Roots was not aware of the extent that lack of internet service was a barrier to accessing virtual care. Now, Roots and researchers can re-allocate their efforts to further understand this need and address it.
“The lack of internet can influence other factors affecting health, such as finding a job, applying to other programs, continuing education and connecting with others within their community,” said Mayra Reyes, clinical services coordinator at Roots.
The group of 12 Stanford and UC Berkeley student volunteers, including medical students and undergraduates, conducted the interviews. Then they co-developed, with the Roots telehealth patient advisory council, solutions for each core area: digital literacy, device access and internet access.
“Students come up with solutions based on patient needs and prototype and demo them in front of patients to get their feedback to see how we can quickly iterate and operationalize them within the health center,” said Woldeyesus.
Stanford medical student Kalijah Terilli joined the effort after she learned from her mother, a physical therapist for children with development delays, about the problems the digital divide posed for her patients.
“At Stanford Medicine, there’s a lot of emphasis on the development of new technologies and all the possibilities that offers,” said Terilli, who helped analyze the survey results. “But many people still don’t have access to existing technologies. Without addressing that gap, we’ll continue to leave these communities out of the conversation and perpetuate inequities.”
The team partnered with EveryoneOn, an organization that trains community-based institutions to provide digital skills training and resources to advance digital equity, to host a six-week digital literacy class at Roots in March and April 2022.
To address the needs of participants who said they didn’t have access to or couldn’t afford broadband service, the student volunteers and staff researched low-cost internet options and provided instructions for getting connected.
“Existing telehealth services and technologies often exclude vulnerable and marginalized communities in the design and implementation process. This is a sobering reality because these are the communities that stand to gain the most,” said Woldeyesus. “We’re trying to flip that narrative with inclusion of patients in the design and implementation of our telehealth services and ancillary support programs to advantage those that are systemically disadvantaged.”
Woldeyesus said many community members have no email address, which is another barrier to using telehealth platforms or patient portals because the applications require people to register using one.
“It’s the little encounters like helping a participant walk through the steps of sending a text message and connecting with family members that make the work impactful,” said Reyes. “Other times it is assisting clients with password recovery so they can find an email connecting them to our workshops or group visits.”
Roots is seeking resources to expand the program’s reach and impact.
Digital literacy, device access and internet access have also been a concern for the Stanford Health Care, Department of Patient Experience. Understanding that these factors drive health and health care access, Rachelle Mirkin, the executive director for health education, engagement and promotion, helped launch a pilot study with digital literacy nonprofit Community Tech Network.
The organization is testing a program to provide devices, internet access and training to patients and families to help keep them connected and prevent social isolation.
Mirkin said that it’s a common assumption that people have internet access. “Reality suggests there are still gaps in connectivity, knowledge and confidence that we must overcome to ensure everyone has the ability to be cared for.”
FOR HEALTH EQUITY
Mobile app empowers community
members to capture data and catalyze
By Sarah C.P. Williams
Nearly a third of the women who live in Bogotá, Colombia, work full time as unpaid caregivers. For decades, these women — numbering more than one million — have been deprived of educational opportunities, economic autonomy and equal access to health care, exacerbating gender inequalities.
In recent years, however, the city of Bogotá has established community centers to offer them resources including child care, education, job counseling, washing machines and workout equipment.
There’s just one problem: Getting to the community centers can be difficult and risky for many of the women, who live in neighborhoods without safe walking routes.
In the summer of 2022, Stanford University undergraduate Zakaria Doueiri visited Bogotá to collaborate with a research team from Universidad de los Andes in supporting community members to address this issue. Working together, the team utilized Our Voice — a technology-supported participatory research method that Stanford School of Medicine researchers have been optimizing for a decade to help people from all walks of life improve their communities.
With the project team’s support, local caregivers used Our Voice’s mobile app to record photos and audio or text narratives about their experiences walking to a Bogotá community center. The goal was to have those experiences inform ideas for making their neighborhoods safer and encourage more people to visit the center.
“A lot of policymakers don’t necessarily have the time or resources to go into these communities and really understand the intricacies of living there,” said Doueiri. “We wanted to give the caregivers an opportunity to document their perspectives and bring their ideas to the forefront of the conversation.”
The Our Voice citizen science method was developed by Abby King, PhD, a Stanford School of Medicine professor of epidemiology and population health, and of medicine. It began when she and her postdoctoral fellows were helping a few California jurisdictions make their cities and streets safer, more accessible and more walkable.
The team designed what has evolved into a multilingual mobile app to let people track facilitators and barriers to healthy living in their neighborhoods — identifying everything from dark alleys that might need lighting to food “deserts” and unkept parks. Users record geotagged photos and audio or text comments, along with positive and negative ratings. The data are captured in community maps and reports that the citizen scientists discuss and interpret and then use to activate change through collaboration with decision-makers.
“We believe that community members are often the people most equipped to understand and gather data about their local environments,” said King. “We called it Our Voice because we wanted to give a voice to people who traditionally have not had a say in local policy.”
The Our Voice method led to immediate successes in an initial research project in East Palo Alto, California, including repaired sidewalks and a community garden. The power of this method, King said, is that it captures the essence of a place and its people in a way that typical data sets often can’t, and the collective data can catalyze relevant and sustainable solution-building.
Sandra Winter, PhD, a former postdoctoral fellow at the Stanford School of Medicine who worked on the early development of the platform, still gets emotional recalling one of the first times she participated in data gathering with the app, joining a wheelchair-bound citizen scientist who pointed out the intersection where he’d been hit by a car a few weeks earlier.
“It was so much more powerful to hear it in this man’s words, and hear how it impacted his life, rather than reading in a spreadsheet that there have been 10 accidents at that intersection,” Winter said.
Winter is now an adjunct lecturer at the Stanford Prevention Research Center and executive director of Senior Coastsiders, an organization in Half Moon Bay, California, that provides resources for older adults. In recent years, she has used the Our Voice platform and method to help aging adults along the nearby coast generate and activate ideas about making their neighborhoods more accessible.
As a result of one of the Half Moon Bay Our Voice projects, officials added a new bus stop and shelter that made it easier for older adults to get to the grocery store and cleaned up trails and updated signage to make walking safer and more accessible.
Over the past six years, King has worked with Ann Banchoff, director of community engagement for the Our Voice Initiative, to expand it from a handful of Stanford University-area projects to scores of citizen science projects across 18 U.S. states and more than 20 countries. A 2016 Robert Wood Johnson Foundation grant helped King and her team launch a global network of Our Voice collaborators worldwide.
One example is a project in Thailand, where villagers displaced by a previously constructed dam are getting a chance to speak about how the changing environment is affecting their lives. In Sweden, a project is probing how to encourage adolescents from diverse backgrounds to be more physically active. And in Colorado, a researcher is using the method to choose locations for vending machines that disperse naloxone — a medication to reverse opioid overdoses.
Meanwhile, projects continue to be launched on the Stanford University campus. Undergraduate and graduate student teams recently collected student opinions on preventing sexual violence and promoting gender equity. The students suggested expanding access to single-stall restrooms, increasing campus funding for safe, communal gathering spaces, and boosting diversity among professors and teaching assistants, among other things.
King said the student projects reflect a broader trend in expanding the initiative’s network of projects and collaborators. Her initial goals often revolved around making people’s environments more conducive to physical activity and healthy eating — issues about which King is particularly passionate.
“Now, we’re using it for a much broader range of topic areas,” she said. “We have Our Voice efforts aimed at infectious disease, social problems, environmental justice, mental health and sustainability.”
Virtual reality advantages
The technology platform is also adding new features. In Colombia, for instance, Doueiri integrated a virtual reality feature into the Our Voice workflow. So, as the unpaid care workers brainstormed how to make it safer and easier to get to the community center, they could each don a pair of virtual reality glasses and experience the walks their peers had recorded.
“They were all able to see each other’s perspectives, which really helped them come together as a team,” said Doueiri.
Now, he’s testing the same virtual reality platform with school-aged children in Half Moon Bay to support them in working with others to make their walks to school safer. Using virtual reality glasses can help them more clearly visualize what solutions — like new traffic signals or crosswalks — would look like in their community.
“Our goal continues to be to get residents of all ages and walks of life involved in using their own data to come up with solutions that may work better than some of the things that policymakers might propose,” said King.
“There are so many different issues that this type of community-facing, by-the-people, citizen science can help address, and we’re always looking for new opportunities, both at Stanford and beyond.”
ARE YOU GOING HUNGRY?
Pediatricians are adding food insecurity
to their health checks
As they care for children and teens, a big question lurks in pediatricians’ minds: “What don’t I know about patients’ lives that harms their health?”
Behind the scenes, many families struggle to afford food, rent or child care. They might have trouble arranging transportation to doctor appointments, getting a landlord to eliminate mold at home, or finding safe playgrounds for their kids.
“Patients have an entire life outside the hospital and our clinics,” said Baraka Floyd, MD, a Stanford Medicine pediatrician and clinical assistant professor of pediatrics. “What’s happening there makes so much more of an impact on their care than anything I can do in a medical visit.”
Though many pediatric caregivers at Stanford Medicine Children’s Health ask families about their circumstances, the organization has lacked a tool to make sure the questions reach every patient or to consistently lead families to helpful resources. That’s set to change.
Floyd leads a multidisciplinary team that is modifying the electronic health record system used by Stanford Medicine Children’s Health, called Epic, to incorporate a sequence of questions about social determinants of health into each patient’s record. After an initial screening, the responses will be easy for clinicians to find.
“Otherwise, a family might be asked the same question by five or six different people over their time with us,” said Floyd, adding that parents feel stigmatized by repeatedly having to explain their child’s unmet needs. “It can make the experience that much harder, even traumatizing for families.”
Connecting to resources
The first two social questions in the electronic health record focus on food insecurity. A health care provider asks whether, in the previous 12 months, a parent worried food would run out — or it did run out — before they had money to buy more.
If parents worry about where their next meal will come from, it’s hard to focus on their child’s medical needs.
“When we address that need, it not only allows us to provide better care to improve health outcomes. It also gives the parent space to put their attention on mutually agreed-on areas necessary for their child’s care,” Floyd said. “This is especially true for children with complex health situations, who are more likely than other kids to have unmet social needs too.”
In collaboration with the Office of Child Health Equity, part of Stanford Medicine’s Department of Pediatrics, Floyd and her colleagues are partnering with Second Harvest Food Bank.
If a family reports experiencing food insecurity, the clinician can generate an electronic referral to the food bank, where an employee calls to offer resources, such as help applying for food stamps or receiving drop-offs of boxes of fruits and veggies or prepared meals.
Digital food insecurity screening tools became available to clinicians in August 2022 — with the nephrology and gastroenterology clinics among the first to use them. The team is spending 18 months troubleshooting the system and working with the food bank to make sure it’s ready to respond to lots of referrals, before expanding screening to every patient.
Ultimately, the team plans to add screening for other social determinants of health: Financial strain and transportation needs are next on the list.
The screening questions will not only benefit patients but also boost the ability of clinicians to advocate for large-scale changes. Stanford Medicine researchers plan to analyze aggregate data — about how common food insecurity is among their patients, where those patients live, and other risk factors they might have — to inform new ways to reduce structural inequities in patients’ communities. Based on her work in Bay Area community clinics, Floyd estimates that over 40% of her patients lack consistent access to enough food, and she believes this is likely an underestimate, she said.
“My hope is that we are able to understand the burden of food insecurity in our community to help target interventions,” Floyd said. “Thinking about it from an equity perspective allows you to learn about the drivers behind the problem. What is causing these needs? What can our institution do to address these drivers?”
The uptick in food insecurity during the COVID-19 pandemic, especially among families with kids, reinforced the need for this work, she added.
“The pandemic really laid bare inequalities. We can’t afford inaction anymore.”
An information trove that’s helping to
reduce health inequities
By Gordy Slack
When Holly Elser, MD, PhD, was a Stanford medical student, a patient with multiple sclerosis told her that heat made her MS symptoms worse. “It’s called Uhthoff phenomenon — when core body temperature increases, suddenly neurologic symptoms worsen due to demyelination,” said Elser, now a resident in neurology at the University of Pennsylvania. “That got me curious and wanting to study how a warming climate might adversely impact people with MS and other heat-responsive diseases.” But just how to study the connections between global warming and patient symptoms wasn’t clear.
About six months later, Elser and a group of colleagues from a variety of fields at Stanford and Columbia universities conducted what Elser said will be just the first of many of their studies about the health ramifications of the changing climate for onset and exacerbation of neurologic diseases. The study, published in PLOS Medicine in 2021, used a detailed, nationwide commercial and Medicare Advantage insurance-claims database to examine the relationships between anomalously warm weather and acute care visits for people with MS.
“If we had wanted to conduct our own longitudinal epidemiological study, it would have taken untold resources to recruit an adequate number of patients to follow over several years,” Elser said.
A deep well of data
What made her retrospective study possible was the Stanford Center for Population Health Sciences. It gave her and her colleagues access to powerful existing data sets full of precise details about the timing and location of inpatient, emergency department and outpatient visits, which enabled them to examine the risk of MS-related health care visits as a function of average monthly temperature data from those patients’ zip codes.
Elser’s was just one of hundreds of studies the center made possible in 2021. The center is currently fueling upwards of 2,800 projects with data sets and has 1,580 members.
It’s a truism of our digital age that data is power. And so-called “real-world” medical data — brimming with potential but collected by physicians, pharmacists and insurance providers without research specifically in mind — has been recognized as an awesome but underutilized resource. It is abundant but expensive; it generally must be purchased from institutions that collect it and must be curated, or changed from its original format into one useful to researchers.
Patient privacy also makes these kinds of data sets daunting to work with. The ramifications of leaking any private patient information could be profound, so data must be kept secure with strict protocols and are often converted into safe, or de-identified, forms (so that no information can be associated with a particular patient) before they can be used by researchers. Such oversight and conversions are time-consuming, technically demanding and expensive, creating a serious impediment for researchers working on their own.
Using data to improve health equity
Since its formation in 2015, the Stanford Center for Population Health Sciences has been a vehicle for smoothing access to such real-world data for researchers in the Stanford School of Medicine community and beyond.
“Our focus on having a direct impact on the world beyond the publication — by influencing good new public health policy, for example — separates us from other data-oriented research centers,” said Executive Director Lesley Sept. “Reducing social and health inequalities guides everything we do.”
The center provides access to large databases full of useful details about its subjects’ health histories as well as administrative and organizational support to everyone from medical and graduate students to well-established multi-disciplinary research labs, government agencies and nonprofits.
In the past year alone, the center has helped more than 1,000 users conduct more than 800 studies resulting in 326 journal publications.
These run the gamut from the particular, such as a clinical study of sociodemographic disparities in the management of pediatric thyroid nodules, to the big picture, such as measuring and combatting systemic racism at the county level.
The center offers users access to 72 different medical data sets of various types. These include commercial databases such as MarketScan that tap into insurance claims, as well as messier, more broadly representative databases, including those shared by Medicaid, Medicare and the American Board of Family Medicine.
The latter provides longitudinal electronic health record data from primary care practices in all 50 states and includes detailed notes from primary care physicians that center director David Rehkopf, ScD, said are especially powerful.
“We can use those data to address pressing questions that can’t be answered in any other way,” said Rehkopf.
To ensure that researchers — even those without data-crunching experience — can tap into such powerful data, the center spent three years developing protocols and an internal infrastructure for curating data to keep patient information secure, and for optimizing databases for easy access.
The center is also a training ground for population health scientists. What’s more, it functions as a multidisciplinary community incubator for developing, honing and testing study ideas, and it has an advisory team that helps translate study results into improved public health policy, said Rehkopf. “We work with people from the education, economics, sociology and psychology departments, from the School of Sustainability and, of course, with many from the medical school.”
The availability of so much data-research-related wisdom, as well the data sets themselves, were key to Elser’s research on the effects of global warming on patients with neurological disorders, she said.
“The center’s secret sauce is providing access to such a rich and diverse network of investigators,” she said. “I’m not an environmental epidemiologist or climate researcher, but I could rely on the center’s ecosystem of extraordinarily collaborative researchers.”
“The center is also a great equalizer,” said Elser. “You don’t have to be a tenure-track faculty member with an NIH-funded project to be able use these data to do important research.”
The center is also pursuing a grant for an 18-month project sparked by a request from the health officer for California’s Solano County to help identify and measure the health effects of structural racism countywide and to find policy or program changes that might mitigate it.
Another project is examining equity disparities in long COVID-19.
“The data we curate and provide at the center is equally useful for clinical projects in more generalizable and diverse populations, as well as projects that focus on the primary drivers of population health and health inequities,” said Rehkopf.
To inquire about joining the Stanford Center for Population Health Sciences and getting access to its data and services, visit redivis.com/StanfordPHS or send an email to firstname.lastname@example.org.
Surveying LGBTQ+ health to build the evidence base for medical care
As medical students at the Stanford School of Medicine in the early 2000s, Juno Obedin-Maliver, MD, and Mitchell Lunn, MD, noted a void in research addressing many of the health and social issues that are unique to sexual and gender minorities throughout their lives.
“We were not finding many evidence-based outcomes about caring specifically for members of the LGBTQ+ community,” Obedin-Maliver said. “As members of this community ourselves, we noticed that sexual and gender minorities seemed to be having not just bad experiences with medical care but also worse outcomes. We saw a need to better understand the physical, mental and social health outcomes related to being an LGBTQ+ person.”
More than 7% of people in the United States identify as lesbian, gay, bisexual or transgender, according to a 2021 Gallup Poll. Yet a 2021 report by the Kaiser Family Foundation found that people who identified as LGBTQ+ were more likely than non-LGBTQ+ people to have their medical concerns dismissed or disbelieved and to be personally blamed for a health problem. All told, over one-third reported having negative encounters with health care providers as compared to fewer than 1 in 5 of non-LGBTQ+ people.
Putting participants first
In 2015 Obedin-Maliver and Lunn launched The PRIDE Study with colleagues at UC San Francisco, where they had both entered fellowship programs. It was the first large-scale, long-term national health study of LGBTQ+ people in the United States.
“We don’t believe being LGBTQ+ in itself dictates someone’s health, but the stigma and discrimination that sexual and gender minorities often experience can adversely affect a person’s health,” Obedin-Maliver said. “Loving and moving in a world that doesn’t see or value the experience of being LGBTQ+ can be a strain.”
For the ongoing study, the researchers built a national network of organizations to engage LGBTQ+ people in health research. “We want all types of diversity within the LGBTQ+ community,” Lunn said, “including people who are diverse in race, geography, education and income.” The PRIDE Study connects researchers and LGBTQ+ people via digital screening tools and questionnaires through a website designed to be easily accessible.
“We made the study national and made it easy to participate online,” Lunn said. “Participants don’t have to travel to medical centers, which often remind them of negative experiences with health care providers. Instead, they can participate in the comfort of their own homes.”
More than 24,000 people across the country have signed up to participate in the study, which has published dozens of papers on topics as diverse as eating disorders, body dysmorphia, migraines, mental health, pregnancy and abortion among LGBTQ+ people.
“Traditional research tools can have different cutoffs or expectations for men and women based on the idea that people labeled as one or the other have different amounts of body water, muscle mass, liver size, etc.,” said Obedin-Maliver. “But this is problematic for transgender, nonbinary and gender diverse people. So how can science and medicine be more specific and accurate to meet the diversity of people as they really are rather than making assumptions that are not actually relevant to people’s health?”
Bringing results back to the community
Community engagement is a major focus of the study. Participants are treated as collaborators rather than study subjects, and research findings and next steps are shared among the participants before publication — in clear summaries without medical jargon.
“In the past, scientific and medical research has been extractive and separated from the communities it seeks to serve. This is not only unkind, it can be exploitative, and it makes for less than optimal clinical care,” Obedin-Maliver said. “If we want to impact health care for the better, we need to make sure what we’re finding comes back to our participants.”
Other researchers can also benefit from the study’s data. “Because we’ve created trust with the community, we’ve been able to generate more data than we can analyze ourselves,” Lunn said. “So we encourage researchers from other institutions and community investigators to approach us and help us analyze data on topics that interest them.”
Participants can choose which individual research projects they wish to be a part of and can opt out of the study at any time. But the researchers hope their collaborative approach will encourage people to continue their participation over time.
“Part of our work is making visible what has often been invisible in the past. People can come and go,” Obedin-Maliver said. “But we hope they come and stay.”
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