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Events, In the News, Medical Education, Medicine and Society

Former Brown University President Ruth Simmons challenges complacency on diversity

Former Brown University President Ruth Simmons challenges complacency on diversity

Ruth SimmonsWhen Ruth Simmons went away to college from a poor section of Houston, she didn’t have enough money to buy clothes. Now, after serving as the president of Brown University and of Smith College, Simmons, PhD, has not only the money, but also the flexibility to select which speaking invitations she accepts.

And at first, Simmons admitted Friday at the third talk in the Dean’s Lecture Series, she was tempted to decline the request to speak on diversity. After a lifetime of refusing to be defined as the “black” woman or the “poor” girl, she didn’t want to be known as a diversity expert.

But: “My initial cynicism gave way to the concern I have for the state of diversity in higher education and society at large,” she said. Just look at the recent events in Baltimore, she said; clearly something is amiss.

Nationwide, there is strong support for the abstract concept of diversity, Simmons said. “But when disassembling diversity into its component parts, support fractures depending on what was at issue.” When pressed about issues such as fair pay, employment opportunities and integration, communities disintegrate into divergent factions.

And in the past, people stuck together in like-minded communities, wary of what she called the “jangle and discord of clashing opinions.” With advances in technology, and the increasing diversity of the U.S., isolation and insulation are no longer possible, she said.

Modeling ways to live together, while airing and respecting difference views, is a responsibility that students and faculty at elite universities need to take on, Simmons said. And universities must be prepared to institutionalize debates and create processes for disagreement. Inherent in the protection of diversity is the protection of free speech, she said.

Top universities should also not shy away from high expectations related to diversity. And their efforts to enhance and support diversity in all forms — race, income, sexual orientation, gender — should go beyond “laissez-faire statements on inclusion.” She lauded Dean Lloyd Minor, MD, for his efforts.

Minor agreed that “diversity is close to my heart.” He said he is motivated by the “fundamental belief that diversity makes us better as individuals and as society, but also because diversity is critical for the work we’re trying to achieve here at Stanford Medicine. In order to lead the biomedical revolution, we must have a diverse community.”

Previously: Panel on diversity calls for transformative change in society, courageous leadership from individuals, Intel’s Rosalind Hudnell kicks off Dean’s Lecture Series on diversity and Diversity is initial focus of new Stanford lecture series
Photo by Norbert von der Groeben

Big data, Cancer, Medicine and Society, Research, Stanford News, Videos

Collecting buried biomedical treasure – using big data

Collecting buried biomedical treasure - using big data

The answers to some of today’s most pressing biomedical questions may be hiding in medical centers – and physicians’ offices – across the country. Buried in medical files are the experiences of thousands of patients, far more than have participated in any clinical trial. These files chronicle their conditions, treatments and outcomes – valuable information that could improve care for millions of current and future patients.

But, and a big but here, accessing the data securely and transforming it into a format available for inquiry can be a logistical nightmare. And that’s where Stanford’s Daniel Rubin, MD, and his team, step in.

“We’re developing methods that will permit us to leverage national data without requiring centers to actually send the data to a central site, which overcomes a big barrier to these kinds of efforts because of privacy and other regulatory concerns,” Rubin said in the video above.

His group is concentrating on cancer and received a 2014 Big Data for Human Health Seed Grant to support the work.

“We’ve developed software that we’ve deployed at these local sites… They run it on their local data and we aggregate the results,” Rubin said. He said the primary challenge is creating a system that is open and invites broad participation, but also keeps the data secure. His project exemplifies the uses of big data. From the video:

You couldn’t do this without big data because there are so many variables that affect a patients’ disease… and you need big data to find enoguht patietns that match those charactoristics to be able to look for similar cohorts to guide decision making.

This effort is part of Stanford Medicine’s Biomedical Data Science Initiative (BDSI), which strives to make powerful transformations in human health and scientific discovery by fostering innovative collaborations among medical researchers, computer scientists, statisticians and physicians. For more on important work being done in this area, mark your calendars for Stanford’s Big Data in Biomedicine conference on May 20-22. More information is available here.

Previously: All data – big and small – informs large-scale neuroscience projectExamining the potential of big data to transform health care, Registration for Big Data in Biomedicine conference now open and Stanford researchers develop web-based tool to streamline interpretation of medical images,

Events, Medical Education, Medicine and Literature, Medicine and Society, Stanford News

Stanford’s Medicine & the Muse event mixes music, dance and pediatrics

Stanford's Medicine & the Muse event mixes music, dance and pediatrics

The annual Medicine & the Muse symposium is one of senior associate dean Charles Prober’s favorite events of the year, and now it’s one of mine too. Prober, MD, the senior associate dean of medical education, kicked off the evening with introduction of this year’s theme, “transformation and triumph.”

It’s a talent show Stanford Medicine style, with medical students providing the singing (ranging from an Italian opera duet to a foot-tapping mariachi tune), dancing (a group modern piece), film (gritty images from the aftermath of Typhoon Haiyan) and readings (a children’s book replete with illustrations of a mop-headed kindergartner who lost her teddy bear in the hospital and a witty novel excerpt about an incoming medical student leaving her plush Upper East Side existence).

Then, throw in chief communications officer Paul Costello’s thought-provoking interview with author and pediatrician Perri Klass, MD, and you have a full evening of entertainment. Klass has written novels, non-fiction books, and numerous essays and journalism articles.

“Transformation and triumph” is a message that captures both the transition of medical students into full-fledged doctors and many aspects of pediatrics, Klass said. She went on to discuss her drive to write; the urge that keeps her at her computer late in the night, spilling out her reflections on that day’s cases. And she explained her work as the national medical director of Reach Out and Read, a non-profit that provides books to low-income children.

The goal as a pediatrician is to get illnesses and other afflictions out of the way so children can blossom and reach their potential, she said. For some families, that means quite literally providing a book, which can serve of the basis for parents to develop an interactive, close relationship with their children.

Klass also offered advice for physicians hoping to hone their writing chops: “Just read good stuff, and write good stuff.”

Previously: A lesson in voice and anatomy from an opera singer, Stanford Medicine Music Network brings together healers, musicians and music lovers and Stanford’s Medicine and the Muse symposium features author of “The Kite Runner”
Photos by Norbert von der Groeben

Autism, Ethics, Genetics, Medicine and Society, Patient Care

Genetic testing, autism, and “fixing” the pathological body

Genetic testing, autism, and "fixing" the pathological body

2678541254_029f25704b_zHow do we know what is pathological, versus what is normal? It seems obvious until you start thinking philosophically, which was the goal of a panel hosted last week by the Science and Justice Working Group at University of California, Santa Cruz. The event was titled “‘Fixing’ the Pathological Body,” a pun on how fixing can mean both repairing and immobilizing.

An anthropologist, a philosopher, and a geneticist discussed how simple, everyday practices like using particular words or certain tests define a line between pathology and normalcy. That line has a huge impact on our experience as humans.

Matthew Wolfmeyer, PhD, professor of anthropology at UCSC, used the term “multibiologism” to indicate that pathology can be seen as a form of human variation. There are three kinds of bodies, he says: those that need no intervention of social, legal, or medical support to enable a livable life, those that do need such intervention (such as a quadriplegic or someone with severe Alzheimer’s), and those that could have such intervention (anyone from hyperactive kids or insomniacs to those with PTSD or arthritis). American society currently divides this spectrum such that the “no intervention” category is becoming empty and the “could have intervention” category is growing by leaps and bounds. Despite what he calls our “cure ideology” from our Judeo-Christian heritage, the pathologies we recognize are increasingly incurable, whether it be gluten sensitivity or chronic cancer, and must be treated with ongoing therapies.

Kelly Ormond, MS, professor of genetics at Stanford, provides genetic counseling and helps people think about these issues every day. She helps expectant parents face the grueling task of deciding what it means to have a baby who might be labeled disabled, pathological, or normal — how would such a child fit into their life, and are they able and willing to accommodate that? Do they even want the information that genetic tests can offer? When counseling parents, Ormond tries to emphasize the lived experience of a condition instead of its medical aspects. Medical information tends to categorize and stir up preconceived notions, but in everyday life the significance of such designations is more fluid, she said.

Janette Dinishak, PhD, professor of philosophy at UCSC, studies autism. She wants to reframe society’s understanding of people with autism such that those without autism are the ones who are limited.

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Medicine and Society

Poetry’s connection to medicine and the body

Poetry's connection to medicine and the body

poetry book

National Poetry Month has been called the “largest literary celebration in the world,” but some people just call it April. As this year’s NaPoMo winds down, it’s appropriate to reflect on poetry’s role in the medical humanities: What does poetry offer to the study and practice of medicine?

Physicians have responded to poetry for years, but the relationship between poetry and healing is often more instinctual than scientific. Last month, Abraham Verghese, PhD, in delivering the Simon Dack lecture during the opening ceremony of the American College of Cardiology meetings in San Diego, recited a poem by e.e.cummings called “I Carry Your Heart.” Robert Harrington, MD, chair of Stanford’s Department of Medicine, commented upon hearing the lecture that hearing that poem provided an opportunity for him and others to reflect on “what cardiovascular medicine is all about… about connecting to one another and to our patients and listening to our patients.”

Poetry offers a common language to physicians and patients. It is short and easily learned by heart, making it ideal for office or bedside conversations.

The connection between hearts and poetry is easy to see. Poets have long used the anatomy of the beloved (eyes, necks, mouths) in their work. But poets also write about the human body in ways that open up for the reader all aspects of human emotion and experience. William Matthew’s poem “Eyes:” opens with a scientific fact – “the only parts of the body the same / size at birth as they’ll always be” – and then goes on to imaginatively describe the process of going blind. Another poet, uses “nystagmus” to describe a blues musician, Shaky Eyes Horton, in a poem that subtly frightens and celebrates. Poets love words, and it’s not surprising that medical jargon shows up in poetry. Could an ophthalmologist use one of these poems to enlarge her experience of her patients and their fears?

The body is often a metaphor for illness of the mind and spirit; “The Spleen,” written in the early eighteenth century, is an extended conversation with melancholia. Interestingly, this seemingly archaic poem is still quoted by journalists when hard science about the spleen is reported. Poetry provides another point of approach for the lay reader less able to navigate the statistics.

Pablo Neruda’s poem “Ode to the Liver” has been published in both Liver International (as a “casual encounter between a poet and a liver researcher”) and Alcohol Research. Neruda praises his liver as a noiseless machinery, knowing that if “one tiny cell / be in error / or one fiber be worn / in your labor / and the pilot flies into the wrong sky / the tenor collapses in a wheeze / the astronomer loses a planet.” What would it mean to patients fighting liver cancer to be given a poem which ends, “I love life: Do not betray me! Work on! / Do not arrest my song.”

Poetry offers a common language to physicians and patients. Poetry is short and easily learned by heart, making it ideal for office or bedside conversations. Physicians: How would it transform your practice to carry a poem in your pocket, the way e.e.cummings describes carrying the heart of his beloved? There are many poems to choose from. You might be surprised how useful they can be.

Jennifer Swanton Brown, RN, MLA (’12) is manager of regulatory services and education, in Spectrum, the Stanford Center for Clinical & Translational Research & Education. She published her first poem in the Palo Alto Times when she was a fifth grader at Escondido Elementary School. Having served as a poet-teacher with California Poets in the Schools since 2001, she is currently serving as the second poet laureate for the City of Cupertino.

Previously: Remembering the strange vigils of war through poetry and dance and Prescribing a story? Medicine meets literature in “narrative medicine”
Photo by Lammyman

AHCJ15, Cancer, Chronic Disease, Events, Medicine and Society, Palliative Care, Patient Care

Looking at cancer as a chronic illness

Looking at cancer as a chronic illness

6903202302_d9740cc15b_zMany of us think of cancer as a terminal illness, but as treatments have become more sophisticated, more and more people are living longer with cancer. So is it becoming a chronic condition like rheumatoid arthritis or insulin-dependent diabetes? A panel at this past weekend’s Association of Health Care Journalism 2015 conference addressed this question, starting with a metaphor that has really lodged itself in my brain: the Niagara Falls approach.

After she was diagnosed with stage-four breast cancer and her oncologist asked her what she wanted to accomplish, Amy Berman, RN, a grantmaker and senior program officer at the John A. Hartford Foundation, replied,”I want to do ‘Niagara Falls.'” For Berman, Niagara Falls means continuing to live with as high a quality of life as possible, and then when such quality is no longer sustainable, dramatically dropping to the inevitable end point. By contrast, a different oncologist had announced to her that they should fight the thing full-force, do everything possible to beat it, including a double mastectomy and chemotherapy until her body could no longer handle the toxicity. Berman thought this would be an inverse Niagara Falls, dramatically reducing her quality of life and then dragging on to the inevitable end.

Berman, who is something of a cancer celebrity, has lived nearly 5 years post-diagnosis at 11-20 percent odds, and she has never been hospitalized. She was beaming during her panel. “I look good,” she said, as the chuckling audience caught her joie de vivre. “And I feel the way I look.”

Berman made the point was that “as our nation ages,” providers need to have serious discussions with patients, not shield them from the truth through rosier prognoses. We need to debunk the myth that palliative care means giving up or accepting a shorter life, she said – rather, it focuses on quality of life and what’s important to patients. It also shifts care from hospital to home, and in doing so saves money: Berman passed up an estimated $1 million in treatment over the past 4 years. “This is how we need to think about care,” she said. “Managing people to live well with serious illness… My cancer cannot be cured, but I’m also not dying today.”

George Sledge, MD, professor of oncology at Stanford, a member of the Stanford Cancer Institute, and a medical writer, is on the same page about palliative care. He said he considers it a success if his patients never go to the hospital. But that doesn’t mean he brushes off the ways in which cancer is different than truly chronic diseases.

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Medicine and Society, SMS Unplugged

My grandfather’s body: Loss and mourning in India

My grandfather’s body: Loss and mourning in India

SMS (“Stanford Medical School”) Unplugged is a forum for students to chronicle their experiences in medical school. The student-penned entries appear on Scope once a week; the entire blog series can be found in the SMS Unplugged category.

6847161038_c6e69c4185_zI’ll pick up where I left off – after the rain.

My grandfather, a pioneering cancer surgeon in the city of Kolkata in India, a dynamic and daring individual, had been ill since a fall in February. I flew home to be with him, and our family took close and attentive care of him both at home and through multiple trips to the hospital.

The morning my grandfather ultimately passed, I had been by his side from an hour before, called in because his pulse was dropping to half of its normal range. His eyes were still closed in sleep, his forehead cool, and a feeble pulse fluttered at his wrist. We called an ambulance, realizing that he was sinking, but feeling ambivalent about transporting his body to the hospital and having him hooked up to intravenous lines and various leads and wires – something he had told us he did not want. In the meantime our family crowded onto the bed, surrounding him with loving thoughts, and I turned on one of his favorite CDs, a collection of devotional Hindu songs dedicated to his guruji, Sadhu Baba. By the time the emergency doctor came up to our seventh floor apartment, about thirty minutes later, his pulse was gone and his heart had stopped. I checked the time: 7:10 a.m.

I share my experiences as a reminder of the poignancy that these rituals may hold. Though these may be private moments…doctors can and should be attentive to them

Mourning is a culturally-mediated experience, and in the world of our family grief was a physical, tangible thing. When the uncertainty of my grandfather’s situation (Was he really gone? What else could make a pulse disappear?) turned to disbelief, and the disbelief to heavy acceptance, our first reaction was to hold the hands that lay tenderly on either side of him, to run a palm along his cool, sunken cheek, to hug his flesh.

I was with him as his body was painstakingly dressed in his favorite cream suit and a lilac tie, with fresh socks on his feet and gold-rimmed glasses in place. He remained resting in his bed, as family members and friends poured in to offer their respects, to pay darshan: to see and be seen by him. The air conditioning was turned on to keep the body cool in the draining April heat.

I was there two days later, when his body, this time in his black suit with a red tie, traveled through the town in a long, silver hearse and was brought back home. We pulled into the apartment complex, where loved ones lined up. They opened the doors at the back of the glass case where his body lay, and placed flowers over his chest, or touched his feet in a gesture of respect toward one’s elders. Some mourners wailed and threw themselves onto his body, or pulled at his clothes, letting their tears dampen his clothes. One bewildered, heartbroken friend and former patient kissed my grandfather’s feet.

And I was there – along with at least 50 other people – at the cremation grounds, where his body was showered with petals, blanketing in fragrant wreaths. Then, the flowers brushed away, we prepared him for cremation, covering his skin with ghee. His three children held a flame and circled around him in prayer, then his body was hoisted into the electric cremation pyre. I was there when we waited thirty, forty, long minutes for the flesh to disintegrate and liberate his soul.

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FDA, Medicine and Society, Men's Health, Research, Science, Women's Health

Sex matters: Why we shouldn’t conduct basic research without taking it into account

Sex matters: Why we shouldn't conduct basic research without taking it into account

2593063816_9a4eaba16e_zIn a PNAS opinion piece (.pdf) published last week, two Stanford faculty are among the authors arguing that sex shouldn’t be overlooked in basic research studies. Londa Schiebinger, PhD, director of the Gendered Innovations in Science, Health & Medicine, Engineering, and Environment program, and Marcia L. Stefanick, MD, director of the Stanford Center for Health Research on Women and Sex Differences in Medicine, take issue with the fact that much of the research that leads to drugs, devices, and our conclusions about biology comes from studies conducted on non-human animals and cell cultures without considering their sex.

Evolutionarily speaking, sex is one of the most well-conserved biological differences, of fundamental importance to 100 percent of the population. Paying more attention to it, the authors claim, would help biomedical research disaggregate data and explain heterogenous outcomes. While some think it would create unnecessary duplication to account for sex earlier in the research process, before drugs and treatments are tested on humans, the authors argue that such practices would save money and be more efficient in the long run. Early tests are far less expensive than removing something from the market because it has adverse effects on half the population. Moreover, preventing such adverse outcomes would keep people of both sexes safer and healthier.

The article states that the FDA is beginning to reconsider whether unisex dosing is accurate and safe for many drugs, and cites that “about 80% of rodent drug studies are conducted only on males, and 8 of 10 drugs withdrawn from the US market from 1997 to 2000 posed greater health risks for women than for men.”

Previously: Stanford professor encourages researchers to take gender into account, A look at NIH’s new rules for gender balance in biomedical studies and Why it’s critical to study the impact of gender differences on diseases and treatments
Photo by Rick Eh?

Aging, Medicine and Society, Pain, Palliative Care, Patient Care, Stanford News, Videos

“Everybody dies – just discuss it and agree on what you want”

"Everybody dies - just discuss it and agree on what you want"

Earlier this week, my colleague pointed to a New York Times essay penned by VJ Periyakoil, MD. In it, Periyakoil calls for a role-reversal in talking about end-of-life issues and encourages patients to take the lead in starting such conversations with their doctors. “Without these conversations, doctors don’t know what the patients’ goals are for living their last days,” she writes. “What are their hopes, wants, needs and fears? Do they want to die at the hospital connected to a machine? Do they want to die at home? The current default is for doctors to give patients every possible treatment for their condition, regardless of its impact on the patient’s quality of life, the cost or the patient’s goals.”

Periyakoil goes on to describe a letter that she and her colleagues created to help facilitate these patient-doctor conversations. The video above expands upon the Stanford Letter Project, which helps patients map out what matters most to them at the end of life, and includes the candid thoughts of numerous older adults.

“If I’m brain-dead, unplug me,” one woman says matter-of-factly. “And I want to die painless. No pain – just put me to sleep and don’t let me wake up.”

In the doctor’s office, one man shares his reason for writing a letter and expressing his wishes: “One of the worst things in the world that you can have happen [is you’re on] your deathbed and you’re putting the burden of life-altering decisions on a family member that has no clue of what you really want or don’t want.”

Advises another older man: “Don’t be ashamed of it – everybody dies. Just discuss it and agree on what you want.”

Previously: How would you like to die? Tell your doctor in a letter, In honor of National Healthcare Decisions Day: A reminder for patients to address end-of-life issues, Study: Doctors would choose less aggressive end-of-life care for themselves, On a mission to transform end-of-life care and The importance of patient/doctor end-of-life discussions

Events, Health Disparities, Medical Education, Medicine and Society, Public Health

An ounce of action is worth a ton of theory: Med student encourages community engagement

An ounce of action is worth a ton of theory: Med student encourages community engagement

IMG_0775Right after graduating from Stanford, Steve (Suk) Ko moved to East Palo Alto with some friends who were also recent graduates. They put all their effort into becoming engaged in their new community, starting and running a tutoring program out of their apartment – which could get really crowded, judging by the pictures he showed last week while speaking to undergraduates interested in public health.

Soon after making East Palo Alto his new home, Ko started medical school at Stanford and continued his service work throughout. “We at Stanford are good at thinking and debating, but less good at action,” Ko said during this talk. “I felt some guilt about indulging in socioeconomic affluence when there was this community right next door.”

Ko’s talk was part of the Primary Care, Public Health, and Health Disparities Lecture Series sponsored by Stanford’s Center of Excellence in Diversity in Medical Education, which aims to produce leaders who can eliminate national-health inequities. Ko shared his personal experience and offered three points of advice:

1). Never lose what makes you special. 

If you’re thinking about how to improve public or global health, “don’t fake it – do what you’re passionate about.” This will lead you in the right direction. As for medical school applications, there are all kinds of ways to have a “research background,” he said.

For Ko, a Korean ethic of hard work and his Christian faith enabled his interest, experiences, and goals in public health. During an undergraduate service learning trip to Oaxaca, Mexico, he shadowed an OB/GYN at a public hospital and was moved both by the beauty of birth and the limited opportunities these newborns faced. Born resource poor and in a society with high gender inequality, “this baby girl had not made a single choice, but 99 percent of her life was already decided,” Ko said. He wanted to think about health in a broader context.

2). An ounce of action is worth a ton of theory.

Last summer, Ko implemented a 5-week summer meal program in East Palo Alto that served kids and their families. The suggestion to focus on food insecurity came from Stanford pediatrician Lisa Chamberlain, MD, Ko’s mentor. The YMCA, Stanford Medicine, and Revolution Foods supported the project, which served 270-370 kids and 4-30 adults every day, and provided a total of 2,525 take-home meals. Ko said it’s “like pulling teeth” to get kids to eat healthy food, but shaping tastes early is key to forming long-term habits. The team ran both quantitative and qualitative analyses of the program, gathering insights like that families are hungrier in bad weather because those who work outdoors or in construction cannot earn money, and that libraries could be great food distribution points.

One of Ko’s most rewarding recent memories was when several of the high-school students he works with made a documentary film about East Palo Alto. They wanted to challenge its unfair portrayal in the news media – although it had the highest homicide rate in the country in 1992, gentrification is now starting to be a bigger problem than crime. “The 90’s were a long time ago,” the students pointed out.

3). Community engagement is difficult, and therefore a privilege.

It was very hard for Ko to gain the trust of his adult neighbors (he says kids are easy: just smile at them). After living there for years, he felt gratified last week when he was ill and a neighbor brought him soup. Trust comes slowly; you have to prove you’re there for the long haul. Even so, circumstances are just hard – what do you do when a student tells you a family member just died from gang violence? Ko coped with the emotional and physical difficulty through his faith and by finding joy in the process, not the outcomes.

One of the audience members asked a question about “white knight syndrome” – the problematic idea that someone from a different community is able (and welcome) to storm in and fix everything. Ko agreed that good intentions can hurt vulnerable people. Temporary involvement doesn’t require accountability and invites the community to be jaded and skeptical, focusing on the impact of the last person/organization. For this reason, it can be much better to join an existing project than to start a new one, he said. But above all, Ko favors humility and a sense of wonder, not just going in and”fixing it”.

Previously: A quiz on the social determinants of health, Stanford researchers use yoga to help underserved youth manage stress and gain focus, Med students awarded Schweitzer Fellowships lead health-care programs for underserved youth, Nutrition and fitness programs help East Palo Alto turn the tide on childhood obesity and Doctors tackling child hunger during the summer
Photo, of Steve Ko (right) and Marcella Anthony of Stanford Medicine’s Community Outreach, by Andrea Ford

 

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