Human rights groups have only two assets: people and information. Learn about Benetech’s decade of putting information technology tools into the hands of human rights activists, with the goal of making these two assets more effective in advancing the global cause of human rights.
Speaker bio
Jim Fruchterman is the founder and CEO of Benetech, a Silicon Valley nonprofit technology company that develops software applications to address unmet needs of users in the social sector. He is the recipient of numerous awards recognizing his work as a pioneering social entrepreneur, including the MacArthur Fellowship, Caltech’s Distinguished Alumni Award, the Skoll Award for Social Entrepreneurship, and the Migel Medal—the highest honor in the blindness field—from the American Foundation for the Blind. Since its founding in 1989, Benetech has touched the lives of hundreds of thousands of people. Its tools and services have transformed the ways in which people with disabilities access printed information, at-risk human rights defenders safely document abuse, and environmental practitioners succeed in their efforts to protect species and ecosystems. Through his work with Benetech and as a trailblazer in the field of social entrepreneurship, Jim continues to advance his vision of a world in which the benefits of technology reach all of humanity, not just the wealthiest and most able five percent.
Jonathan H. Chen was an intern at Stanford Hospital a few years back, admitting patients with unusual medical syndromes or rare diseases.
He wasn’t always sure how to immediately treat these patients.
“I found myself clueless at times,” said Chen. “I thought to myself, I should review the chart of a similar patient who had an experienced clinician care for him so that I can learn from their care plan.”
That triggered Chen’s eureka moment.
“Why look at just one person’s chart?” he thought. “Why not look at the last thousand charts to see how all doctors take care of their patients in similar cases?”
Doing so, he would have the potential to crowd-source the collective wisdom of physicians all in one central location.
Already having a PhD in computer science and spending a few years as a software developer before medical school, Chen — a wunderkind who started college when he was 13 — knew he had the rare set of skills to marry medicine and technology.
“I thought about how the Amazon product-recommender algorithm works and thought, `Can we do this for medical decision-making?’” said the 34-year-old Chen, a VA Medical Informatics Fellow at Stanford Health Policy.
So instead of, other people who bought this book also liked this book, how about: Other doctors who ordered this CT scan also ordered this medication.
“What if there was that kind of algorithm available to me at the point of care?” he asked. “It doesn’t tell me the right or wrong answer, but I bet this would be really informative and help me make better decisions for my patients.”
The National Institutes of Health agrees. Chen was recently awarded a five-year NIH grant as the principal investigator behind OrderRex, a digital platform that data-mines electronic medical records to learn clinical practice patterns and outcomes to inform concrete medical decisions.
Chen is designing and coding OrderRex with the help of his chief mentor, Russ Altman, a professor of bioengineering, genetics and medicine and director of Stanford’s Biomedical Informatics Training Program. Stanford Health Policy professors of medicine, Mary Goldstein and Steven Asch, round out his core team of grant mentors. Grant collaborators Nigam Shah, Lester Mackey, and Mike Baiocchi are providing additional critical expertise.
“I think OrderRex is a first step towards an entirely new way to provide decision support to physicians,” said Altman. “We will not only have a large database of patients from which we can collect similar patients to create virtual cohorts, but we will also have a database of the decisions that their physicians have made in different clinical situations.”
Altman added: “Each of these capabilities would be transformative — but together they would really change what is possible for a provider sitting with a patient, making decisions about diagnosis and therapy.”
The NIH’s Big Data-to-Knowledge grant will allow Chen to develop and test the platform. Stanford Medicine’s Center for Clinical Informatics provided Chen a year’s worth of Stanford Hospital records, including every medical order for every patient. The more medical data he loads, the more patterns begin to form.
Chen has been using a derivative of Amazon’s algorithm to make his platform scalable with millions of patient records. The broad vision is to eventually integrate this tool with hospital computer networks to assist physicians with their decisions.
“Imagine, technology allowing medical decisions to be informed by the collective experience of thousands of other physicians right at the point-of-care,” Chen said.
There are naysayers who worry such a product will further alienate physicians from their patients and allow doctors to jump to crowd-sourced conclusions about treatment. Chen emphasizes OrderRex would only serve as a tool, which does not substitute for human contact, calculations and conclusions.
“Tools like this are simply to augment the medical decision-making process and hopefully — and I know this is a big goal — improve the quality and efficiencies of health care.”
Altman says the lacking-human-touch argument is imprecise and potentially unethical.
“Of course, providers will always be real people and of course they should be empathetic, listen to the patient, examine the patient, and think about what’s best in the big picture,” he said. “But if there are technological tools that they can use to improve their decision-making, it is probably unethical to replace data-driven decision-making with `touch’ and ‘intuition’ — which often perpetuates the status quo and contributes to variability in practice and variability in outcomes.”
Stanford Medicine is already leading the revolution in precision health and big data to overcome human error and misdiagnosis.
The idea is to give doctors access —a green button — to patient data from a vast collection of electronic medical records. They wrote that the instant access to EMRs isn’t a substitute for a clinical trials, but better than resorting to the physician’s own bias-prone memory of one or two previous encounters with similar patients.
Chen is working with those professors, but notes the Green Button concept is to look for “patients like mine” and ask questions about different treatment options that may yield different results. His approach looks for “doctors like me,” and anticipates what the doctor wants before they ask for it.
“The conceit of my approach is that all practicing doctors are already trying to make our best-guess decision to improve our patients' outcomes,” he said. “Rather than trying to directly predict how to change a patient outcome, I look to the records of physician decision-making that already represent a wealth of expertise we are not leveraging in a systematic way.”
Could that wealth of expertise one day make Chen a wealthy man, perhaps the Jeff Bezos of the medical informatics world?
“I wouldn’t complain if I was,” Chen said with a grin. “But if I just wanted to make money, I wouldn’t have gone to medical school,” He gave up a lucrative living as a software developer.
He does recognize, however, that for OrderRex to have a big impact, commercial applications such as licensing the product as an add-on to EMR systems are likely.
“So, having a broad impact that will serve the mission of improving quality and efficiency — that is the ultimate goal.”
Every Halloween there seems to be another animated brushing campaign to save children from their own sweet tooths. For most, the goal is simple: better oral hygiene for kids.
PLAQUEMONSTER is different.
Developed by Jason Wang, director of the Center for Policy, Outcomes and Prevention (CPOP) and a Center for Health Policy/Center for Primary Care and Outcomes Research (CHP/PCOR) core faculty member, and his team, PLAQUEMONSTER does encourage children to practice good oral hygiene. However, the true purpose of the app is to provide feedback on the user’s engagement that can be used for future forays into mobile health.
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Smart phone users can download the application to create a “tooth pet” and help it grow by brushing and flossing daily. Neglect oral hygiene, and the tooth pet will grow dirty, become infected by “plaquemonsters,” and eventually end up in jail.
Using the game’s team mechanic, the app urges children to encourage their friends to brush and floss. Teammates can release a tooth pet from jail, so kids must hold each other accountable if they want their team to progress.
“The social aspect really does make a difference,” said Zara Abraham, a digital media specialist at CPOP and one of the app’s designers. She found that the app’s first child testers “would always be on the phone making sure that each one was doing their work, checking on their teeth.”
The social aspect is likely to engage children more than the average brushing and flossing campaign, according to Abraham. The app’s storyline also helps set PLAQUEMONSTER apart.
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“The storyline we came up with was really sticking it to the man,” said Abraham. Developers set tooth pet up as a heroic rogue character who does what he thinks is right by eating healthy despite pressure to give in to Big Candy. Facing peer pressure to subsist on a diet of candy but also more serious pressure from “candy corporation,” tooth pet must expose the company’s nefarious practices so that teeth can be clean again. The game’s darker aspects and complex storyline may help make the game more accessible to older children and hopefully will keep kids engaged longer.
However, PLAQUEMONSTER is more than just a game, more even than a campaign for oral hygiene. Wang’s team hopes to use health literacy games along with demographic and engagement information to develop other mobile health apps. Ultimately, PLAQUEMONSTER is a tool for discovering how people engage with health on a mobile platform and how mobile health apps can improve health care.
“The spirit that Jason brings to the app is the game mechanics of behavioral economics,” said Manuel Rivera, product manager at CPOP.
Eventually, Wang’s team hopes to develop other mHealth apps that could aid patients with serious conditions, helping them to track their health and engage in their care plan. Wang’s long-term goal is for “people who are of working age and elderly to improve their quality of life and health trajectories” using mobile health.
If all goes well, PLAQUEMONSTER could be a first step toward active engagement between patients and health care using mobile platforms.
This project is supported by an NIH Director's New Innovator Award.
Medical researchers must work together across disciplines to provide better health care to those who need it most, according to panelists at Stanford Medicine’s Annual Population Health Sciences Colloquium.
The symposium, hosted by the Stanford Center for Population Health Sciences, brought together working groups from across the Stanford campus to showcase the latest findings in population health research.
“Population health science at Stanford is likely to make the most important contributions when we cross traditional intellectual expertise disciplines,” said Paul H. Wise, a core faculty member at the Center for Health Policy/Center for Primary Care and Outcomes Research (CHP/PCOR).
Many of the scholars at the daylong conference on Tuesday stressed that an interdisciplinary approach to health care is crucial to understanding and aiding underserved populations.
“To deal with life-course questions we need to create-life course observational windows,” said Mark Cullen, chief of the Division of General Medical Disciplines and director of the Stanford Center for Population Health Sciences.
Instead of trying to create an all-encompassing care plan for the human population as a whole, panelists demonstrated that studying the needs of particular groups, or smaller populations, can better serve individuals within populations that may not receive the best care.
Douglas K. Owens, director of CHP/PCOR, said the U.S. Preventive Services Task Force, of which he is a member, has “often faced a real paucity of data trying to develop prediction guidelines for both the very young and the old.”
The Task Force, a panel of experts that makes recommendations for medical prevention services, is generally able to make guidelines for large populations like adults, but suggestions for specialized groups like children and the elderly are more challenging. Though Stanford researchers like Wise are working to improve care for particular sectors like children, more study is needed.
Several speakers at the conference said the underserved population of poor children could benefit from research targeted toward their population group.
“We don’t really understand the biology of the life-course, why things taking place in gestation and early life actually affect healthy aging and adult onset disease,” said Wise, adding, “We have a very poor understanding of how to translate this understanding into effective interventions for communities in need.”
Panelists agreed that big data can help them understand smaller, poorly served populations, such as young children in impoverished communities. By collecting large amounts of data from the general population, researchers will increase the amount of data available for more specific groups. This allows researchers to study these populations more closely and help create better outcomes.
Abby King, a professor of health research and policy and of medicine, and Jason Wang, director of the Center for Policy, Outcomes and Prevention (CPOP) and a CHP/PCOR core faculty member, believe life-course digital applications can provide individualized care while collecting data on a large-scale.
According to King, a life-course app, or a device to track health and provide care throughout one’s life, would grow with the user and help them through important developmental stages.
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Wang has taken a first step toward creating such an app with PLAQUEMONSTER. Intended for children eager for Halloween candy, the PLAQUEMONSTER app provides kids with a “tooth pet” they must keep safe from “plaquemonsters” and the so-called evil candy corporation. By flossing and brushing their teeth each day, kids earn points, and Wang’s team hopes the game will encourage good dental hygiene.
Health-care techniques using mobile devices, known as mHealth, could be particularly useful in underserved populations. King notes that even low-income populations have cell phones, so using phones as health-care tools could help decrease the gap between higher- and lower-income populations.
“I think for us one of the major challenges of the century is to really close that health-disparities gap and mHealth can help.”
However, each app must be tailored to the user.
“There’s no reason to believe that an African-American 16-year-old is going to be motivated the same way as a 45-year-old white man,” said Wang. “You need to involve patients in the design of the app.” When the app fits the specific patient’s needs, they are more likely to use it regularly, and knowing the needs of their population helps determine their preferences.
As the world continues to become more connected, the panelists said that reaching across disciplines and incorporating technology may hold the key to effective health care in the 21st century.
Ian Crozier, MD, is a walking laboratory for Ebola and a living testament to the damaging, long-term consequences of the disease, which are still very poorly understood.
As a volunteer physician with the World Health Organization in Sierra Leone, he worked furiously last fall to save patients in the heat of the Ebola crisis in West Africa. Then on Sept. 9, 2014, he became one of those patients himself and was airlifted to Emory University Hospital in Atlanta, where his vital organs rapidly began shutting down.
During an Oct. 21 appearance at Stanford, Crozier recounted his astonishing recovery, during which he rebounded from a torturous period of being hooked to a ventilator and a kidney dialysis machine, experiencing abnormal heart rhythms, and developing severe encephalopathy that left him delirious and then unconscious for weeks, ultimately suffering several hemorrhagic strokes.
“If I you had told me on day one that I would develop multisystem organ failure and asked me to predict my chances of survival, I would have said my chances were zero,” he told more than 100 faculty, students and staff in a standing-room only talk at the School of Medicine. “They [the Emory caregivers] really changed the game…. I really think they were walking on the moon, but in a different kind of space suit.”
Dr. Ian Crozier, dressed in personal protective equipment, with Ebola-positive Sierra Leonean children. Schools remain closed in Sierra Leone and Liberia, two countries hit hard by the Ebola outbreak.
He was among the sickest of patients to survive the disease and continues to suffer from a variety of disturbing consequences, including eye problems, hearing loss with tinnitus, short-term memory loss, seizures and sleep dysregulation, he said. He wryly cautioned his audience that he was approaching his “hour of narcolepsy” as he started his late- afternoon talk.
It coincided with a plethora of recent news reports on the long-term consequences suffered by many Ebola survivors. The epidemic has killed more than 11,300 people and has not reached its end; in just the last few weeks, three new cases were reported.
Evaluating patients who may have coronary artery disease (CAD) is a challenging and extensive process. With an array of testing options and possible results, finding a method that is accurate, cost-effective, and as uninvasive as possible helps patients achieve a higher quality of life during the testing process. In a recent study, Mark Hlatky, a professor of medince and of Health Research and Policy, and his co-authors assessed a new evaluation method, fractional flow reserve (FFR), which may improve patients' quality of life and decrease costs while testing for CAD.
Using data collected in the PLATFORM (Prospective Longitudinal Trial of FFR: Outcomes and Resource Impacts) study, Hlatky et al. compared traditional invasive and noninvasive testing methods with techniques using FFR. Procedure costs and quality of life for patients were compared at the time of testing, then again 90 days after testing was completed.
The authors concluded that testing strategies using FFR were "associated with lower use of medical resources and significantly lower costs compared with a strategy of invasive coronary angiography." When testing with FFR, less than half the normal rate of more invasive procedures were needed. Their findings suggest that combining FFR strategies with more traditional methods could decrease the need for invasive procedures, saving money and improving quality of life for patients.
Health economics expert Laurence C. Baker has been appointed chair of the Department of Health Research and Policy (HRP) in the Stanford School of Medicine. He said he intends to encourage students and faculty within the department to expand the use of emerging data and analytic tools in their health-care research and policy recommendations.
Baker, a professor of health research and policy and a core faculty member at the Center for Health Policy/Center for Primary Care and Outcomes Research, succeeds Philip W. Lavori, who becomes vice chair of the newly established Department of Biomedical Data Science.
“Laurence is a natural and excellent choice for the HRP chair position,” said Stanford Dean of Medicine Lloyd Minor. “Well-respected, trusted, and admired by his peers, Laurence has been chief of Health Services Research within HRP since 2001, during which time the division has grown in strength and reputation.”
Minor called Baker one of the top health economic experts in the world with a strong policy focus, saying he would “bring the unique perspective, energy, and thoughtful guidance needed during this time of change for the department.”
The Health Research and Policy department houses the divisions of Health Services Research and Epidemiology, and provides the analytical foundation for research conducted at the Stanford School of Medicine, offering expertise, research and training on collecting and interpreting the scientific evidence essential to improving human health.
“It’s an exciting time for health policy and the Division of Health Services Research,” Baker said. “The country is facing important challenges in our health-care system, and countries around the globe are looking for insights and new ideas that can improve health care. So there are real opportunities for Stanford to be a leader and make a difference.”
Baker, who is also a research associate at the National Bureau of Economic Research, said that in his new role he intends to strengthen the epidemiology and the health services research groups at HRP. He will build on Lavori’s efforts to recruit diverse junior and senior faculty, train and retain graduate students and post-MD physician scientists, and make significant contributions to the Stanford Cancer Institute and Population Health Sciences.
“I’ve learned a lot from Phil and have really appreciated his steady and thoughtful leadership of HRP, as well as his insightful approaches to seeking excellence at a time of great change," Baker said. “We already have a strong history of making important contributions, and I think we are in an excellent position to make the most of new opportunities — like bigger and better emerging data and analytic tools and new settings for research — to do outstanding work.”
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Baker said that the department successes have also included growing its faculty, establishing new PhD programs and working on interdisciplinary research projects at the School of Medicine and in collaborations with CHP/PCOR.
“I want to continue looking for opportunities to grow and strengthen the research and education that we offer, in the hope that we can strengthen the overall contribution to national and international health policy that Stanford can make,” he said.
Baker’s research examines the impact of financial incentives, regulations and organizational structures in health care. He also looks at the impact of managed care and related insurance arrangements on health care costs, the pricing of physician services, prices for health insurance and the availability and utilization of medical technologies.
Baker completed his doctoral degree in Economics at Princeton in 1994, and joined the faculty at Stanford in HRP soon after. His research focuses on the way that changes in health-care delivery systems influence the cost and quality of care, with a particular interest in the growth of large, multi-specialty, and hospital-affiliated medical practices.
In addition to his position in HRP, Baker is a professor of economics (by courtesy) at Stanford, a fellow of the Center for Health Policy, and a senior fellow of the Stanford Institute for Economic Policy Research.
He also leads the School of Medicine’s Scholarly Concentration and Medical Scholars programs. Baker has received multiple honors and awards, including the ASHE medal from the American Society of Health Economists, and has helped lead key professional groups, serving on the boards of directors of the International Health Economics Association, AcademyHealth, and the American Society of Health Economists.
“There is growing recognition of the need for well-crafted health policies that can help us deliver quality care and real value,” Baker said. “More and more people are on the lookout for ways to improve population health in the United States and around the world, so I think we’re going to see more interest in the kind of work we do.”
Most Americans will get at least one faulty diagnosis in their lifetime, sometimes with devastating consequences and “urgent change is warranted to address this challenge,” a panel of medical experts said Tuesday.
Exact figures on diagnostic errors are hard to come by, as reporting is not required. Some medical experts have estimated that more than 12 million adults are misdiagnosed every year.
“Despite the pervasiveness of diagnostic error and the risk for patient harm, they have been largely unappreciated within the quality-safety movement in healthcare — and this cannot and must not continue,” said Dr. Victor Dzau, president of the Institute of Medicine, an independent organization of the country’s leading medical and health policy researchers.
“Diagnostic errors are a significant contributor to patient harm and have received too little attention until now,” he said at a public briefing in Washington, D.C., about the report, “Improving Diagnosis in Health Care.”
To address the challenge, the IOM convened the committee comprised of medical and health policy researchers to improve diagnosis in medicine. The Committee on Diagnostic Error in Health Care members include experts from Stanford, Harvard, Drexel, Tufts, the Memorial-Sloan Kettering Cancer Center, Kaiser Permanente and more than a dozen other universities and national medical organizations.
“The report is packed with reasons and directions for action from all, in ways that support what patients deserve from the health-care system: freedom from worry about inattention to diagnostic errors,” McDonald said. “That's been the status quo for too long.”
The committee issued a set of goals to reduce diagnostic errors and improve medical outcomes. They recommend that the health-care community:
Facilitate more effective teamwork in the diagnostic process among health-care professionals, patients and their families.
Enhance health-care professional education and training in the diagnostic process.
Ensure that health information technologies support patients and health-care professionals in the diagnostic process.
Develop and deploy approaches to identify, learn from and reduce diagnostic errors and near misses in clinical practice.
Establish a work system and culture that supports the diagnostic process and improvements in diagnostic performances.
Develop a reporting environment and medical liability system that facilitates improved diagnosis through learning from diagnostic errors and near misses.
Design a payment and care delivery environment that supports the diagnostic process.
And provide dedicated funding for research on the diagnostic process and diagnostic errors.
The experts emphasized that medical education must include more of an emphasis on the diagnostic process. And new technologies, such as electronic health records, should be built on better collaboration among the IT vendors, users and the Office of the National Coordinator for Health Information Technology.
The new study was an extension of two benchmark reports by the institute released 15 years ago, which revealed the startling statistic that 100,000 Americans die in hospitals every year due to medical errors.
“These landmark reports from IOM reverberated throughout the healthcare community and were the impetus for system-wide improvement in patient safety and quality,” Dzau said.
The Department of Health and Human Services reported in December that there was a decline from 2010 to 2013 in hospital-acquired infections, which translated to 1.3 million patients and $12 billion in health spending avoided.
“You can see we have come a long way,” Dzau said. But, he added: “The critical element that has been absent from patient safety and quality is diagnostic error.”
In a video released at the public briefing, two patients talk about their own misdiagnosis and that of a loved one, and how those errors forever changed their lives. They were told they were overreacting and not to question their doctor. One said she was embarrassed at having wasted the valuable time of the hospital doctors and nurses.
“The video has two patients for whom things went poorly and one who had a first-class diagnostic experience because of excellent teamwork,” McDonald said. “And this is one of the key messages of the report. We need less of the old model of diagnosis from one expert to more of a teamwork approach to the diagnostic process.”
Dr. John Ball, chair of the committee and executive vice president emeritus of the American College of Physicians, said clinicians must work toward a culture where patients are central to the solution.
“Patients and families are first; diagnostics are second and those who support it, third,” said Ball. “This is an issue that matters to patients, and we’re shining a light on it.”
Ball said getting the right diagnosis is critical because it impacts every other health care decision that follows, as well as the quality of life for the patient.
The committee members were asked during the briefing why they were not recommending that misdiagnosis reporting be mandatory, something that likely will lead to controversy.
“The committee believes that given the lack of agreement on what constitutes a diagnostic error, given the complexity of hard data and the lack of valid measurement approaches, the time was not right to call for mandatory reporting,” Ball said. “Instead it was appropriate at this time to leverage the intrinsic motivation of health-care professionals to improve the diagnostic performance and to treat diagnostic error in the same way we treat other quality improvement efforts by health-care organizations.”
MUMBAI, India – India’s colors, crowd and noises can overpower a newcomer. And the unfathomable wealth and crushing poverty that are both on display reinforce the sense that this is a country of extremes.
Four Stanford students embraced this savory sensory overload while navigating the labyrinthine Indian health-care system during seven weeks of research in the poor communities outside the financial capital, Mumbai, this summer.
“I think this experience has just hammered into me that it’s a very diverse country with a range of experiences,” said Lina Vadlamani, a Human Biology major just starting her senior year. “As one pharmaceutical owner said to us, ‘India might be poor — but the Indian people are not.’ There’s just so much going on here.”
One day they whizzed by bright Bollywood movie posters in belching auto-rickshaws and gaped up at Antilia, the 27-story mansion of a business tycoon considered the world’s most expensive home after Buckingham Palace.
The next, the students were talking to mothers of one Dalit community — members of the so-called “untouchable” Hindu caste — in the slums on the outskirts of Mumbai. They sat on the floor of a one-room community center taking notes as the women told them about their struggles to get access to medicine and doctors.
And yet another day, the students and their Indian colleagues and translators crouched in a small stucco pharmacy in the heat and humidity of the monsoon season while talking to a doctor about the procurement of traditional medicines.
The three Stanford seniors and one School of Medicine student were tracking access to health care, the quality of that care, and the way pharmaceutical networks impact medical practices in India. The Stanford India Health Policy Initiative fellows saw for themselves that the world’s largest democracy has become a microcosm of humanity’s bustling economic prosperity and yawning stretches of poverty.
“I think Mumbai is the place to see the extremes of inequality,” says Mark Walsh, an Economics major starting his senior year and a coterm who already has a Master’s in Public Policy with a focus on international development. “I’m just trying to think about how some of this great prosperity can be applied to the health problems that are affecting some of the most disadvantaged members of Indian society.”
Hadley Reid, another HumBio senior, and Pooja Makhijani, who just began her second year at the Stanford School of Medicine, are the other fellows. The students spent six days a week in the field for seven weeks and then would debrief one another every night back in their rooms on what they had learned that day.
“I’ve always thought I might be interested in doing international field work,” said Reid. “And I thought this fellowship would be a good way to experience that and see what’s really happening on the ground versus what you learn in the classroom.”
Navigating the three medical practices in India
Grant Miller, an associate professor of medicine and core faculty member at the Center for Health Policy/Center for Primary Care and Outcomes Research, directs the India Health Policy Initiative. The program, now in its third year, aims to work on the ground to identify obstacles to health-care delivery in the South Asian nation.
Miller gave the four fellows a mission: Spend your summer investigating the pharmaceutical networks that cater to the three main branches of Indian medicine:
The more mainstream Western practice of allopathy;
The traditional AYUSH system of medicine: ayurveda, yoga, unani, siddha and homeopathy.
And the large network of providers who have no formal medical training.
“The fellowship has two objectives,” said Miller, also a senior fellow at the Freeman Spogli Institute for International Studies. “One is to develop a nuanced, on-the-ground understanding of the practical realities that often cause otherwise promising health programs in India to fail. The other is to provide in-depth, non-clinical field experience to Stanford students interested in global health.”
Nomita Divi, program manager of the initiative, said the fellowship is designed to be demanding. During the preparatory spring quarter, the students brainstormed with a design-thinking expert about how to formulate their research and work toward specific goals. When the students return to Stanford later this month, they will focus on unpacking and analyzing the data and then writing a full report.
“Our aim is to expose students to the realities of field research in India and provide them sufficient time to grasp the realities on the ground, as well as provide them with the tools to assimilate their observations into a final report,” said Divi.
When they arrived in Mumbai in early July, the fellows went through a week of training with Veena Das, the renowned social anthropologist from Johns Hopkins University who is on the executive board of the New Delhi-based Institute of Socio-Economic Research on Development and Democracy (ISERDD). She taught the students how to conduct field research and compose discussion guides before they crossed the thresholds of more than 100 homes of patients and offices of physicians, pharmacists and drug wholesalers.
ISERDD is a nonprofit organization devoted to research on social and economic issues and is the leading partner of the Stanford initiative, providing decades of qualitative and quantitative data sets as well as field researchers who worked alongside the students all summer.
“Primary care in poor parts of India is centered around drugs,” Miller said. “This summer, our fellows focused on the relationship between pharmaceutical suppliers and health providers, many of whom work in the informal sector — that is, they lack formal clinical training of any kind.”
Only 1.3 percent of India’s GDP was devoted to public health in 2014, one of the lowest rates in the world, according to the World Bank. India still accounts for 21 percent of the world’s burden of disease, yet the amount of public funds India invests in health care is quite small compared to other emerging economies.
Most of the cost of health care falls to the patient in India, where 86 percent of the 1.2 billion people must pay for health care and medications on their own. While the private sector caters to Indians who can pay, the poor are left to rely on the often less-than-optimal public health care system and a network of family and friends.
Unproductive spending and corruption also cripple the system.
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In the Field
Jaya Jadhav, a young mother in the Dalit community, explained to the students that they rely on a government nurse who comes once a month to hand out paracetamol. They have no local doctor to treat the more serious cases of typhoid and malaria, so must travel to the next settlement to see a doctor.
The women also turn to poorly trained practitioners who purchase wholesale drugs from small manufacturers and dispense these cheaper, unlabeled and often diluted pills to their patients.
As the students interviewed the women, a dozen children sat on the floor eating government-donated puffed rice and boiled gram from tiffin pots; mothers nursed beneath their saris and politely answered questions. At the end, the women asked shyly if the Stanford students had any medications they could share.
The students explained they were not doctors, but hoped that learning about the women’s daily lives would help them with their findings.
“Well, if it will one day benefit the women in the area, then this exchange of ideas about health is a good thing,” says Jadhav.
But the students weren’t always so sure.
“One of the things that I’m struggling with is the frustration of being able to do so little for these people, who basically have nothing but are ready to give us all their time,” says Makhijani, an American whose parents are from Mumbai. “But I realize I have the potential to be able to do that in the future, so I’m considering coming back to work here one day.”
Hoping for Results
Vadlamani — one of the HumBio majors who this fall also begins the Department of Medicine’s new coterm Master’s Program in Community Health and Prevention Research — applied for the fellowship because of its emphasis on field work.
““It makes us feel like detectives in a way,” said Vadlamani, who was born in the southern India city of Hyderabad and moved to the States with her parents when she was an infant. “I hope we would leave this experience with a couple of concrete areas that need to be focused on that would, down the road, lead to a policy change.”
Reid also believes their summer-long research will yield results.
“I’m not saying we’re painting the broadest, most accurate picture of the situation in India,” she said. “I know we’re taking a very small sample outside of Mumbai. But the hope is our findings will decrease some of the obstacles to effective policymaking for the health care system in India one day.”
Some of the key trends the students observed include the murky government regulations on certain classes of drugs, and the lack of knowledge about the current restrictions of antibiotic and steroid use among AYUSH doctors.
And compounding communicable diseases, such as tuberculosis and HIV/AIDS, Indians are increasingly suffering from non-communicable diseases as well.
“That’s happening across the developing world, these chronic lifestyle diseases such as diabetes and hypertension,” said Walsh. “And these families aren’t used to having to deal with these kinds of chronic diseases.”
The rural poor cannot afford to see a primary care physician who would school them in lifestyle changes to fight a potentially deadly disease such as diabetes.
And those who can afford a doctor in rural India often can’t find one.
India currently has some 840,000 doctors, or about seven physicians for every 10,000 people, according to the World Health Organization. That compares with about 25 in the United States and 16 in India’s economic rival, China.
The doctors the students did meet were generally overworked and struggling to keep up with all their patients and the shifting laws and regulations. But the students were forced to let go of some of their preconceived notions.
“Although there’s definitely a lot of gaps in knowledge, I’ve been surprised at how much doctors do know and how well trained they are,” said Makhijani, who often visits family in Mumbai, but had never ventured out into the poorer communities where her grandfather once ran a government hospital.
“I’ve never had such personal interactions with people living in the slums, with the doctors who are working here,” she said. “It really turns your perspective around, how resilient and creative they are.”
An Honor and Duty
Dr. Masood Ahmed Khan, a physician and pharmacist, spent nearly two hours with the students, with no prior knowledge that they would show up at his door and pepper him with questions about how he runs his unani practice.
When asked why he would give so much of his time, he said it was his “honor and duty” to help the students better understand the ups and downs of his medical community in one of the poor Muslim corners of Mumbai.
Dr. Khan then bid farewell with a cup of masala chai and this advice as they embark on their careers: “Go with empathy, go with humanity — and go with humility.”
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Beth Duff-Brown is the communications manager for the Center for Health Policy/Center for Primary Care and Outcomes Research. She joined the students in Mumbai for a week to blog about their research. You can read the blog postings here.
Although the expansion of Medicaid under the Affordable Care Act has made millions of low-income and rural Americans eligible for health insurance, many states don’t provide dental coverage for adults under their Medicaid programs.
Paying for dental insurance on the individual market or paying for dental services out of pocket is cost-prohibitive for Medicaid beneficiaries, many of whom are at or beneath the federal poverty level.
So many have turned to emergency rooms for such care.
The researchers said Medicaid dental coverage could help reduce the need for many low-income Americans to visit emergency departments for dental conditions that may have otherwise been prevented with adequate access to basic dental care.
“It is likely that EDs will continue to provide care to individuals without adequate access to community-based dental care unless new dental service delivery models are developed to expand access in underserved areas, and unless more dental providers begin to accept Medicaid under the ACA,” the researchers wrote in their study, which was published today in Health Affairs.
Dr. Ian Crozier, dressed in personal protective equipment, with Ebola-positive Sierra Leonean children. Schools remain closed in Sierra Leone and Liberia, two countries hit hard by the Ebola outbreak.
