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Medical Education, Medicine and Literature, Patient Care, Pediatrics

Stanford Storytellers: Medical students write a children’s book to comfort and educate

Stanford Storytellers: Medical students write a children's book to comfort and educate

hospitalcolorThis spring, four Stanford medical students wrote a children’s book, Stanford Storytellers, which uses imagination to help children understand and feel comfortable in the hospital.

Authors Afaaf ShakirMichael Nedelman, Karen Hong, and Zahra Sayyid, along with illustrator Emma Steinkellner, a Stanford undergraduate, came together through a call for interested Stanford Medicine students to collaborate on a children’s book in honor of this year’s Medicine and the Muse symposium’s keynote speaker, Perri Klass, MD. Klass is a professor of journalism and pediatrics at New York University and a children’s author who is involved with Reach Out and Read, a non-profit encouraging early childhood literacy in pediatric clinics.

“Funny enough,” Nedelman told me, “all the med students who showed up to the [book] meeting were my classmates – third-years who should’ve probably been falling asleep on a couch somewhere. Things really clicked when we found Emma, whose visual style was perfect for the project.” I recently spoke with Nedelman and the other group members over email, as coordinating their busy schedules was like herding cats!

Where does your perspective on a hospitalized child’s experience come from? 

Hong: I’m currently on my pediatrics rotation and I see a lot of children who would get some reassurance from a book like ours. Just today, I was talking to a little boy who really wanted to take his IV out. You have to keep your arm straight for days on end and deal with the uncomfortable feeling of having a needle in your arm – who would want that if they didn’t understand why it’s there? We talked about how the clear plastic tube delivers a magic “potion” into his system to fight off his infection and it was amazing how fast his attitude changed. This isn’t always the case with every patient but it’s nice to see the power of imagination at work.

Sayyid: I remember distinctly the first book series that I couldn’t put down: Lurlene McDaniel’s young adult books, which focused mainly on girls who were struggling with chronic illnesses and death. Each of her stories focused on a different girl with a different disease, almost all of which were fatal. Although I luckily did not experience much time in the hospital as a child, I remember reading those stories and thinking, “Wow, this could have been me.”

Shakir: I grew up in a house with two pediatrician parents, which meant I never went to a doctor’s office, let alone a hospital. It wasn’t until I came to medical school that I realized that kids without physician parents have a totally different take on medicine than I did. It’s completely unfamiliar to them, and things aren’t often explained in a way that a kid can understand. That perspective has fueled me to empower patients (both adults and kids) with knowledge about their care and their bodies. In addition, being in medical school gives us the unique perspective of being young in our training (the ‘kids’ of medicine) where things are still new and strange, but also being medical ambassadors for our patients. We have enough knowledge to explain concepts without forgetting what it was like to not understand them. Writing this book has been a great reminder of the importance of that communication.

hallwayWho do you hope will read the book? How do you hope it will be distributed?

Nedelman: There are lots of people I’d love to see connect with the book: The 5-year-old chemo patient, seeing the hospital through a new lens. Or his classmates, who may not understand why he always seems to be missing class. Or the attending physician, perhaps with young kids, who understands that a little bit of imagination can really help reframe an unfamiliar and at times uncomfortable experience.

Shakir: Our ultimate hope is that our book reaches the children we are writing it for. We intentionally made our protagonist a character who was easily accessible to as many kids as possible.

Nedelman: We don’t know what condition this character has; it’s all in first-person so even the child’s gender is interpretable by the reader. And even though our protagonist is seen flying, floating in space, and rolling in a wheelchair, we actually never see this character walking around.

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Big data, Events, Stanford News

Countdown to Big Data in Biomedicine: Technical showcase to spotlight companies’ innovations

Countdown to Big Data in Biomedicine: Technical showcase to spotlight companies' innovations

14222209716_d3072f7737_zLater this week, thought-leaders from academia, information technology corporations, venture capital firms, the U.S. government and foundations will convene for the Big Data in Biomedicine conference to explore opportunities for mining the rich repositories of biomedical information.

In addition to sessions on topics ranging from crowdsourcing to genomics, the conference will include a technical showcase where conference-goers can peruse displays and demos highlighting companies’ innovations related to big data. Part technology expo and part networking opportunity, the technical showcase will include light refreshments and be held under a tent on the lawn of the medical school’s Li Ka Shing Center for Learning and Knowledge.

Participants for this year’s event include advanced patient monitoring firm Flashback Technologies, which will present an innovative index for body-fluid levels in trauma situations and a device to do it on the spot; Zephyr Health, a company that pairs real-world data with predictive analytics to provide insights that are strategic and actionable; Samsung, which will show how the company’s personal devices are moving into human health solutions; and Personalis, a startup providing researchers and clinicians with accurate DNA sequencing and interpretation of human exomes and genomes.

The conference is part of Stanford Medicine’s Biomedical Data Science Initiative, which strives to make powerful transformations in human health and scientific discovery by fostering innovative collaborations among medical researchers, computer scientists, statisticians and physicians. The event runs from Wednesday through Friday.

Previously: Countdown to Big Data in Biomedicine: Leveraging big data technology to advance genomics, Countdown to Big Data in Biomedicine: Mining medical records to identify patterns in public health and Harnessing mobile health technologies to transform human health
Photo from last year’s technical showcase by Saul Bromberger

Pediatrics, Research, Stanford News, Stem Cells

Near approval: A stem cell gene therapy developed by Stanford researcher

Near approval: A stem cell gene therapy developed by Stanford researcher

It has been a momentous month for Stanford researcher Maria Grazia Roncarolo, MD. Following decades of research in Roncarolo’s lab and the clinic, pharmaceutical company Glaxo SmithKline has applied for final approval by European Medicines Agency (EMA) of a treatment she developed to cure a deadly childhood immune disorder. If approved by the EMA, which is Europe’s equivalent of the U.S. Food and Drug Administration (FDA), the treatment would be the first gene stem cell therapy to be granted approval by a major medical regulatory agency.

The therapy cures a disease called severe combined immune deficiency (SCID), sometimes called the “bubble boy disease,” by inserting a gene into blood stem cells and transplanting the stem cells into the patient’s body. The treatment is still being evaluated by the FDA.

My greatest satisfaction is that kids who were once incurable now have options

If approved, the treatment will no longer be considered an experimental therapy in Europe, and “people will be able to get this treatment as they would any other, and will be able to get their insurance company to pay for it,” Roncarolo told me. The final regulatory review marks the beginning of a new era in which genetically modified stem cells might be used to treat or cure a wide variety of human diseases, she also noted.

Roncarolo developed the treatment while she was scientific director at the San Raffaele Scientific Institute in Milan, Italy. There, she treated kids who were born with an inability to make the enzyme adenosine deaminase (ADA), which leaves them unable to make certain immune cells that protect them from infection. For that reason, children with ADA-SCID are forced to spend their lives in a sterile environment that protects them from infections that most people would easily fight off but are deadly for them.

Roncarolo and her team inserted the gene for ADA into blood stem cells which were transplanted into 18 children with the disease. Once the modified blood stem cells could produce the enzyme, they were able to form the necessary immune cells and the children were able to leave their sterile environment. “Those children have been effectively cured,” Roncarolo said.

Other gene therapies have been developed before, but those therapies modified more mature cells that cannot reproduce themselves. Only stem cells can both make more copies of themselves and also produce more specialized cells. If gene therapy is used to modify cells that are not stem cells, the treatment will only last as long as the cells last. Eventually, mature cells age and die, and the disorder returns.

Last year, Roncarolo was recruited to Stanford to continue her work while serving as co-director of the Institute for Stem Cell Biology and Regenerative Medicine. She is busy researching cures for other congenital immune disorders and developing methods that could lead to stem cell treatments for a wide variety of other diseases.

“My greatest satisfaction is that kids who were once incurable now have options,” Roncarolo said.

Previously: Countdown to Childx: Stanford expert highlights future of stem cell and gene therapies

Patient Care, Pediatrics, Research, Stanford News, Technology

A new tool for tracking harm in hospitalized children

A new tool for tracking harm in hospitalized children

Medical-chartsIn the 15 years since the Institute of Medicine issued its groundbreaking report showing frequent harm caused by medical care, researchers have worked to devise efficient, reliable ways to detect harm to patients. Finding out what aspects of care most often hurt patients is a key step in reducing these harms, but voluntary reports, in which caregivers are asked to document harm they cause, only identify a small percentage of total harms.

New research published today in Pediatrics describes a better approach for tracking harm to kids in hospitals. Using the system on 600 medical charts from six U.S. children’s hospitals, the researchers found that almost 25 percent of patients included in the chart review had experienced at least one harm, and that 45 percent of these harms were probably preventable. The approach, called a “trigger tool,” was based on a similar harm-tracking method designed for hospitalized adult patients. Researchers look at each medical chart for “triggers” – events or lab measurements often associated with harm – and when they find a trigger, explore the medical chart in detail around the time of the trigger to see if harm occurred.

“This tool will allow us to better understand the epidemiology of harm in hospitalized children, as well as give us the capacity to track harms over time to determine if our interventions are making an improvement,” said senior study author Paul Sharek, MD, an associate professor of pediatrics and chief clinical patient safety officer at Lucile Packard Children’s Hospital Stanford and Stanford Children’s Health. He collaborated with scientists from several other institutions on the research.

I talked with Sharek last week about the study’s findings and implications. To start, I asked him to give me an example that would help me understand the difference between preventable and non-preventable harm. A child who receives a medication that provokes an allergic reaction has experienced a non-preventable harm if it’s the first time the child ever got the drug, and there were no clues beforehand that she had the allergy, he told me. But if the drug allergy was already known and the patient got the drug anyway and had an allergic reaction, that is a preventable harm.

The high rate of preventable harms shows that there is a lot of room to make all hospitals safer for kids, Sharek said. One surprise in the data was that nine common healthcare-acquired conditions that have been targeted by national safety efforts – including central line-associated bloodstream infections, ventilator-associated pneumonia and surgical site infections – together accounted for only 4 percent of all harms identified in this study. “If we were able to eliminate every one of these, according to these data, we’d still be left with 96 percent of the harms we identified,” Sharek said.

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Cancer, Neuroscience, Pediatrics, Research, Stanford News, Videos

How one family’s generosity helped advance research on the deadliest childhood brain tumor

How one family’s generosity helped advance research on the deadliest childhood brain tumor

Back in February 2014, Libby and Tony Kranz found themselves at the center of every parent’s worst nightmare. Their six-year-old daughter Jennifer died just four months after being diagnosed with diffused intrinsic pontine glioma (DIPG), an incurable and fatal brain tumor. At the time, the Kranzes decided to generously donate their daughter’s brain to research in hopes that scientists could hopefully develop more effective treatments for DIPG, which affects 200-400 school-aged children in the United States annually and has a five-year survival rate of less than 1 percent.

As reported in the above Bay Area Proud segment, Michelle Monje, MD, PhD, an assistant professor of neurology and neurological sciences who sees patients at Lucile Packard Children’s Hospital Stanford, and colleagues harvested Jennifer’s tumor and successfully created a line of DIPG stem cells, one of only 16 in existence in the world. More from the story:

Using Jennifer’s stem cell lines and others, Monje and her team tested dozens of existing chemotherapy drugs to see if any were effective against DIPG. One appears to be working.

The drug was able to slow the growth of a DIPG tumor in a laboratory setting. Monje’s hope is that this treatment one day could extend the life of children diagnosed with DIPG by as many as six months.

That would have more than doubled Jennifer’s life expectancy.

“It’s a step in the right direction if we can effectively prolong life and prolong quality of life,” Monje said.

Libby Kranz says that for their family, donating their daughter’s tumor to researchers “just felt right.” She and Tony hope that by aiding the research efforts, parents and families will have more, and better quality time with their sick children.

“It’s incredible and it’s humbling,” she said, “to know my daughter is part of it, and that we’re part of it too.”

Previously: Existing drug shows early promise against deadly childhood brain tumor, Stanford brain tumor research featured on “Bay Area Proud,Emmy nod for film about Stanford brain tumor research – and the little boy who made it possible and Finding hope for rare pediatric brain tumor

Events, Stanford News

Stanford’s Health Matters happening on Saturday

Stanford's Health Matters happening on Saturday

kid on helicopterTomorrow, Stanford Medicine opens its doors to the public as part of its annual Health Matters event. On the agenda: medical and health talks (sample topics: how to stay healthy and injury-free while working out, what you need to know about heart disease prevention, and what researchers are learning about longevity and aging) and a series of interactive exhibits. Among those hands-on activities: cooking demonstrations and Q&As with Stanford nutritional experts, a meet-and-great of the stars of Stanford’s canine wellness program, and the opportunity to hop on and learn more about the lifesaving technologies that happens in the Life Flight helicopter.

Parts of the event will be live tweeted; if you can’t physically be here, follow along on @StanfordHealth all day.

Previously: Stanford Medicine’s community open house happening on May 16 and Stanford Medicine community gathers for Health Matters event
Photo by Alex Johnson

Medical Education, Research, Videos

Students draw inspiration from Jimmy Kimmel Live! to up the cool factor of research careers

Students draw inspiration from Jimmy Kimmel Live! to up the cool factor of research careers

To better understand how teens feel about scientific research and to make a career in health or medicine a more desirable occupation among adolescents, University of Chicago researchers and a group of high-school students from Chicago Public Schools took a page out of the Jimmy Kimmel Live! playbook.

Using the model of Kimmel’s “Lie Witness News” segment, the predominantly minority teens asked their peers what they think about research. The project was part of the NIH-funded TEACH STRIVES program, which aims to prepare and inspire Chicago public school students to pursue careers in health-related research. Samantha Ngooi, a project manager with TEACH STRIVES, and Vineet Arora, MD, a principal investigator with the program, discuss the students’ project in a recent KevinMD post:

What did these students find when they asked their peers about research? Well, not surprisingly [the] term “research” had a largely negative connotation — “lots of paperwork,” “lab rats.” However, our teens went one step further. They found studies that would be of interest to them — about things they cared about, such as teen health with cell phone use. When presented with research that linked cell phone use at night with depression, teens on the street were inspired to learn more. Unfortunately, this idea that research is esoteric and irrelevant is common amongst teenagers. Ask your average teenager what they aspire to be and more often than not a “researcher” will not be a contender. In fact, data suggests that few high-achieving high school students are considering a career in research, let alone healthcare research.

Why is this important? To make breakthroughs in science and medicine for the future, we need a healthy pipeline of diverse, talented teens to consider entering research careers in STEM fields…

Watch above to see the full video.

Previously: High schoolers share thoughts from Stanford’s Med School 101, At Med School 101, teens learn that it’s “so cool to be a doctor” and Stanford’s RISE program gives high-schoolers a scientific boost

Cancer, Research, Science, Stanford News

Kidney cancer secrets revealed by Stanford researchers

Kidney cancer secrets revealed by Stanford researchers

I enjoyed recently writing about a collaboration among researchers from Stanford’s School of Medicine and the School of Humanities and Sciences. Oncologist Dean Felsher, MD, PhD, and chemist Richard Zare, PhD, joined forces to learn more about a kidney cancer called renal cell adenocarcinoma; their research was published in the Proceedings of the National Academy of Sciences earlier this week.

In the future, we hope to use this model to… identify those kidney cancer patients who might respond favorably to specific therapies

Together Felsher and Zare found that an aggressive form of kidney cancer has a distinct lipid profile (lipids are a class of molecules found in cell membranes; they also function in cellular signaling pathways and in energy storage). To do so, they used a new technology called desorption electrospray ionization mass-spectrometric imaging, or DESI-MSI. It sounds complicated, but it led directly to a new, previously unsuspected therapeutic approach that may soon be tested in humans. As I described in my article:

DESI-MSI creates a highly detailed, two-dimensional map of the chemical composition of a tissue sample through a process that can be loosely compared to a specialized car wash. Samples are sprayed with a thin, high-powered stream of liquid droplets that dissolve their outer surface. The resulting back spray, which contains molecules from the surface of the sample, is collected and analyzed by mass spectrometry. By moving the tissue sample around in a two-dimensional plane, it’s possible to make a chemical map of its composition.

The researchers found that the cancerous kidney tissue had a chemical composition distinct from that of healthy tissue. In particular, it had higher-than-normal levels of molecules generated as glutamine is metabolized. Blocking the activity of a protein called glutaminase, which is responsible for metabolizing glutamine, caused the animals’ tumors to grow more slowly when [Myc expression was activated].

To conduct the work, researchers in Felsher’s laboratory genetically engineered a strain of mice that could be triggered to express high levels of a cancer-associated protein called Myc in the tubules of their kidneys. These mice quickly developed an aggressive form of kidney cancer when Myc was expressed. Conversely, the kidney tumors shrank significantly when Myc expression was halted. As Felsher told me:

In the future, we hope to use this model to categorize different types of kidney cancer and identify those patients who might respond favorably to specific therapies. In the near term, we can test whether blocking glutamine metabolism is a viable approach for people with Myc-dependent liver cancer.

Previously: Unraveling the secrets of a common cancer-causing gene and Smoking gun or hit-and-run? How oncogenes make good cells go bad

In the News, Medical Education, Research, Science, Stanford News

Medical students explore the wide, wide world of research at annual Stanford symposium

Medical students explore the wide, wide world of research at annual Stanford symposium

Research SymposiumTraining medical students in research skills has long been a focus at Stanford. To get an inside glimpse of how this works, read my story on the Stanford Medical Student Research Symposium, an annual event where students present poster boards of their research for judging by faculty.

The depth and breadth of individual research accomplished by medical students who, at the same time are juggling classroom and clinical education, is impressive. The faculty representative at the event explained the educational process to me:

“Stanford tries really hard to open doors in the area of scientific research and give students a little nudge to go through,” said Laurence Baker, PhD, director of the Scholarly Concentration program, a required program of study for medical students that promotes in-depth learning and scholarship. Each of Stanford’s medical students are required to complete at least one quarter’s worth of research, but most do more, he said.

“We train the kind of doctors who become leaders,” Baker said. “Whether that involves publishing, clinical work, research or patenting — education in scientific research is a key element of training.”

My story also provides a taste of the conversation between one of the students who used the Veterans Administration database to conduct his research of opioid drug use and a judge of the event, who plays the dual role of evaluator and teacher. She provides both constructive criticism and encouragement to the budding physician-scientist:

In a dress shirt and tie, Raymond Deng, a third-year medical student, stood next to a poster describing his research on opioid use among veterans. “I’m interested in addiction medicine,” he said. “Prescription drug abuse is huge.” He was discussing his findings with Sonoo Thadaney, director of the Program in Bedside Medicine… Thadaney, the symposium judge, listened intently to his description, nodding her head in encouragement. “Why did you pick this study?” she said, clipboard in hand. “Personal reasons,” Deng said, adding that someone in his life has a heroin addiction, and that an epidemic in prescription drug abuse has been shown to have contributed to an increase in heroin use. She nodded again. “The great thing with data like this is that the data itself can bring up questions that we didn’t think of,” she said. “If the Googles and the Yahoos of the world can use data like this for research, so can we. Great work. Go crazy with it.”

Previously: Contemporary health issues focus of Stanford med students research presentation, As part of annual tradition, budding physician-scientists display their work and New class of physician-scientists showcase research.
Photo by Norbert von der Groeben

Cancer, Health Policy, In the News, Public Health, Women's Health

Health hazards in nail salons: Tips for consumers

Health hazards in nail salons: Tips for consumers

3044578995_fe5151de75_zAfter exercise class the other day, my friend asked if I wanted to grab coffee and get our nails done. With nail salons on what seems like every block, having a manicure or pedicure is as easy as grabbing a latte. You don’t need an appointment and you’re done in less than an hour.

But this convenience comes at a cost. A recent investigative report in the New York Times exposed the not-so-bright side of nail salons. The articles have raised awareness of poor working conditions and health risks, and they’ve generated a vigorous public dialogue.

“It got people talking and that’s a good thing,” said Thu Quach, PhD, MPH, a research scientist at the Cancer Prevention Institute of California and research director at Asian Health Services.

An epidemiologist, Quach has spent much of her career studying harmful chemicals in nail care products and their health impacts on nail salon workers, a vulnerable workforce that is mainly comprised of low-income immigrants. In research studies she has conducted over time, Quach identified symptoms commonly experienced by salon workers, including dizziness, rashes, and respiratory difficulties, and more serious reproductive health effects and cancer.

“Unfortunately, the risks associated with chronic, long-term exposure to chemicals used in nail products have been little studied,” Quach said. “We know workers are exposed every day and their health is at risk – this is an important focus of my ongoing research.”

The California Healthy Nail Salon Collaborative (CHNSC), convened through Asian Health Services, educates salon owners, workers and consumers about health and safety issues, and advocates for stronger protections for all. Quach, who has been a CHNSC member since its inception, works closely with other members to address worker health and safety using an integrated approach of community outreach, research, and policy advocacy to address health and safety. The CHNSC has worked at the local, state, and federal level to promote changes.

Encouraging counties and cities to adopt the healthy nail salon program is a first step in their local approach. Participation is voluntary and to date three counties and one city have committed: Alameda, San Francisco, San Mateo, and Santa Monica. These counties provide training and formal recognition for salons that participate. Santa Clara has the program in the works and many salons throughout the state participate in healthy initiatives on their own.

In addition to local municipalities taking action, some manufacturers have stepped up to omit the “toxic trio” – dibutyl phthalate, toluene and formaldehyde – from their formulations. But despite rising awareness of the health hazards posed by these chemicals, many products still contain them and there is no regulatory oversight.

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