Published by
Stanford Medicine

Category

Media

Autism, In the News, Media, Medicine and Literature, Mental Health

The Reason I Jump: Insights on autism and communication

As I write this, I’m keenly aware that communication is one of the most common, and perhaps most difficult, things we do. That’s why I was both humbled and heartened when I read about Naoki Higashida’s book The Reason I Jump on Biographile today.

The book is described as a “stunningly clear-eyed look into the experiences of a boy with autism.” But, as explained in the review, many of the themes Higashida addresses in his book, “reveal truths about communication and connection that all humans should contemplate.”

In the Biographile interview, Higashida, who was 13 when he wrote the book, describes hard-to-grasp, prickly concepts such as communicating with compassion, and why good communication is hard work but worth the effort, with bell-like clarity. I cannot wait to get my hands on the book.

From the review:

Some people tend to assume that individuals with all kinds of disabilities have a less than mature understanding of language. But in many cases, even when speech and language production are impaired, understanding is not. Higashida explains to readers that baby talk is disheartening for him to hear as a young man. He encourages people not to talk down to people with autism, or anyone. “True compassion is about not bruising the other person’s self respect,” he writes, revealing not only an expert command of language but also wisdom beyond his years.

To share his experiences and his fiction with the world, and even to communicate basic needs to his family and caretakers, he painstakingly spells out the words on alphabet grids while others transcribe. He admits learning to communicate independently was hard work and at times, he felt “utterly beaten” by the process. But, Higashida reminds us, “to live my life as a human being, nothing is more important than being able to express myself […] it’s about getting across to other people what I need and what I need them to understand.”

Holly MacCormick is a writing intern in the medical school’s Office of Communication & Public Affairs. She is a graduate student in ecology and evolutionary biology at University of California-Santa Cruz.

Previously: More Stanford findings on the autistic brainA mother’s story on what she learned from her autistic sonUsing music to improve communication skills in children with neurodevelopmental disorders and Stanford study reveals why human voices are less rewarding for kids with autism

Cancer, Media, Medical Apps, Technology, Videos

Weekend viewing: A roundup of TED talks on health, fitness and happiness

Weekend viewing: A roundup of TED talks on health, fitness and happiness

In case you haven’t seen it, the Greatist has a nice roundup of top TED Talks on fitness, health and happiness. If, like me, you look for practical tips on how to apply medical research and technology tools to create a healthier life, you might be interested to browse this selection over the weekend.

Among the videos highlighted is a 2011 talk by Daniel Kraft, MD, titled “Medicine’s future? There’s an app for that.” Kraft, an inventor and Stanford School of Medicine-trained physician, is an NIH-funded faculty member affiliated with the Stanford. In this TED talk he discusses apps to track quantified-self metrics and tools to improve personalized medicine. He also surveys ways medical professionals are–or soon will be–using technologies such as robotic surgery, nanomedicine, virtual patient visits, and crowdsourcing data on an exponential scale to address major challenges in health care today.

From the video:

By leveraging these technologies together, I think we’ll enter a new era that I like to call Stage Zero Medicine. And as a cancer doctor, I’m looking forward to being out of a job.

Previously: Why networks of “micro-experts” are a valuable resource for the medical communityBig Data in Biomedicine videos now available onlineBertalan Meskó discusses how mobile technologies can improve the delivery of health care and Stanford surgeon uses robot to increase precision, reduce complications of head and neck procedures
Video by TED

Global Health, Health Disparities, In the News, Media, Microbiology, Public Health

A journalist’s experience with tuberculosis, the “greatest infectious killer in human history”

I’m a bit late in finding it, but The Global Mail published a fascinating and sobering feature article last week about the  heartbreaking toll of drug-resistant tuberculosis in parts of the developing world. Journalist Jo Chandler traveled to Papua New Guinea in 2011 to tell the personal stories of those affected with the disease, which is rampant in the country, including a woman named Edna who lost her 19-year-old daughter, Susan:

Tuberculosis retains the distinction of being the greatest infectious killer in human history, claiming an estimated billion lives in the past 200 years. Its toll today is still second only to HIV (and it is the major killer of people with HIV). In 2011, 8.7 million people fell sick with TB. Edna’s daughter was one of 1.4 million who died of it that year.

The story is illustrated with beautiful, disturbing photographs of villagers with the disease that alone are enough to keep me reading. But then Chandler’s narrative takes a riveting, disturbing turn:

Sometime in those few days, somewhere, someone coughed or sneezed or sang or laughed, spraying a cloud of invisible Mycobacterium tuberculosis into the air, and I inhaled. By the time my ride out finally materialises on the tarmac and I click my heels for home, it seems I have a stowaway. Eighteen months later, in March 2013, I am diagnosed with multidrug-resistant tuberculosis (MDR TB). Let’s call it accidental immersion journalism.

I digest all this as I recover at home, still a little shocked when I hear the phrase “I’ve got TB” come from my mouth – and still adjusting to the horrified response it often elicits. My body is sore from surgery, and weakened and assailed by the mindblowing volume and variety of drugs coursing through unhappy veins. My partner is gentle and my children attentive and my parents worried. I’m profoundly grateful to every doctor, every nurse, and for every jab and tablet and almost every bloody cannula.

I have notebooks full of stories of TB patients who die seeing none of it.

Chandler’s story first attracted my interest because of an article I wrote early this year about how the bacterium hides out in the bone marrow of patients, only to resurface years or decades later. But I found I couldn’t tear myself away from Chandler’s comparison of the treatment that she’s receiving at home in Australia (including four months of IV drugs) with that available to infected people in neighboring Papua New Guinea. And like most readers, I suspect, I found myself deeply embarrassed of my lack of awareness of this killer.

Previously: Tuberculosis may remain dormant in bone marrow stem cells of infected patients, Researchers show way to reduce prevalence, spread of TB in former Soviet Union and Coming soon: a faster, cheaper more accurate tuberculosis test

Autoimmune Disease, Media, Nutrition, Pediatrics, Research, Stanford News

Join Stanford pediatric gastroenterologist for Twitter chat on celiac disease research

Join Stanford pediatric gastroenterologist for Twitter chat on celiac disease research

On Thursday, Stanford pediatric gastroenterologist KT Park, MD, will participate in a Twitter chat about his latest research on celiac disease. The chat will be hosted by the American Gastroenterological Association and begins at 12 noon Pacific Time. Follow the conversation and ask questions using the hashtag #CeliacChat.

Park and colleagues at Stanford published findings (subscription required) in the latest issue of Clinical Gastroenterology and Hepatology showing that screening adolescents who are either symptomatic or at high-risk for celiac disease is more cost-effective than universal screening. Researchers compared both approaches in an effort to determine if one method would prove better at preventing bone loss and non-traumatic hip and vertebral fractures in celiac patients. Park, co-lead study author, discussed the team’s findings in a American Gastroenterological Association release:

Our study showed that conducting systematic screening of patients at risk of celiac disease is more cost effective than screening all adolescents for the disease. We determined that adopting a universal screening strategy fails to increase the long-term quality of life of the population as a whole, and introduces potential harm from unnecessary endoscopic evaluations of healthy individuals.

There is an ongoing clinical concern in the GI community that the current practice of celiac disease screening misses a considerable proportion of asymptomatic patients due to the frequency of silent or inactive disease. However, implementing universal screening to prevent bone disease and subsequent non-traumatic fractures alone in undiagnosed or untreated celiac disease patients does not appear to be a viable health policy alternative to the standard of care.

Screening only those at risk was more cost effective, by a margin of $60, in preventing bone loss and fractures among patients with undiagnosed or subclinical disease. However, researchers noted that future analysis of risk and cost of other potential consequences of undiagnosed patients, such as anemia, infertility and malignancy, could alter the cost-effectiveness of universal screening for celiac disease.

Previously: Living the gluten-free life, From frustration to foundation: Embracing a diagnosis of celiac disease and Gluten: The “new diet villain?”
Photo by Wellcome Images

Media, Research

How using Twitter can benefit researchers

For researchers still on the fence about using social media tools to engage with colleagues and the public, a recent post on Active Scientist offers a short primer on ways Twitter can prove useful in monitoring relevant content about developments in your field.

Among the guidance on using Twitter to filter science news, the piece offers tips on who to follow, topics to tweet and lists the following benefits for researchers:

  • Keep track of developments in your field and in touch with distant colleagues.
  • Alert the media when you are about to publish or have made significant progress toward a scientific goal.
  • Develop an online presence as someone who cares about scientific progress in your field.
  • Present your scientific ideas and interests to a general audience. Twitter is a great tool for public outreach.
  • Join campaigns to increase government funding of science, make scientific publishing open access, or whatever your interests are.

In a Q&A published this week on Scope, Stanford physician Leah Millheiser, MD, discussed her motivation for using social media to raise awareness and foster discussion about issues relating to women’s sexual health. Millheiser recently launched her own blog and Twitter feed.

Additionally, the School of Medicine  feed (@SUMedicine) currently maintains Twitter lists of organizations affiliated with the medical center and Stanford physicians and biomedical researchers.

Previously: Social media advice from a physician-bloggerAdvice for physicians when interacting with patients online33Charts’ Bryan Vartabedian talks about physician blogging and How can physicians manage their online persona? KevinMD offers guidance
Photo by Steve Garfield

Cardiovascular Medicine, Events, In the News, Media, Patient Care, Pediatrics, Stanford News

Packard Children’s heart transplant family featured tonight on Dateline

Packard Children's heart transplant family featured tonight on Dateline

This evening, Dateline NBC will broadcast “Against All Odds,” a one-hour program devoted to the story of one family whose five children all have signs of the same heart disease, dilated cardiomyopathy. The Bingham family of North Powder, Oregon, first came to Lucile Packard Children’s Hospital in 2006, when their oldest daughter, Sierra, needed a heart transplant. A press release from Packard Children’s describes what happened after Sierra’s successful transplant:

“When Sierra received her heart transplant in 2006,” recalled dad Jason, “we thought that was the end of it.” But in spring 2012, Lindsey became sick with symptoms eerily similar to Sierra’s, and the Children’s Heart Center then discovered all the kids had developed heart issues over time. Lindsey was placed on the heart transplant list, and received a Berlin Heart bridge-to-transplant device on July 1, the same day brother Gage was implanted with a pacemaker. And after months of living in the hospital while the Berlin Heart kept her stabilized, when did Lindsey receive her donor heart? On Valentine’s Day of this year.

The Dateline program chronicles many milestones of the year-plus the Binghams spent living at the Ronald McDonald House at Stanford for their kids’ treatment, including the moment Lindsey learned that a new heart was waiting for her, the Valentine’s Day transplant and the family’s recent reunion with their friends and family in Oregon. Tune in at 8 p.m. Eastern Time/7 p.m. Central Time and keep your box of tissues handy.

Previously: One family – and five children with the same serious heart disease, Pediatric patients on the Trick-or-Treat Trail
Photo by The Family Album Project

Cancer, Media, Pediatrics, Research, Stanford News

Emmy nod for film about Stanford brain tumor research – and the little boy who made it possible

Emmy nod for film about Stanford brain tumor research - and the little boy who made it possible

“Dylan’s Gift,” a documentary detailing how one family’s generosity is advancing research on a little-understood childhood cancer, has been nominated for an Emmy. The film, which was inspired by a 2009 Stanford Medicine story, explores the work of Stanford physician-scientist Michelle Monje, MD, PhD, who cares for pediatric brain cancer patients and conducts research on a rare, vicious brain tumor that arises in school-aged children and usually kills them within a year of diagnosis. As an FBR Media release explains:

When their 5-year-old son, Dylan, is diagnosed with a rare and fatal brain tumor and given just 6 months to live, Danah and John Jewett become determined to fight the deadly disease, called Diffuse Intrinsic Pontine Glioma (DIPG). When their son’s life is tragically cut short, they donate Dylan’s tumor to research at Stanford University School of Medicine. This generous gift has helped scientists create the first-ever mouse model of DIPG. The DIPG mouse model is now shedding light on this devastating disease and helping scientists discover new treatments and a potential cure to help other children. This episode was filmed on location at Stanford University School of Medicine.

In the above trailer, the Jewetts share their heart-wrenching story and discuss their decision to donate Dylan’s brain tumor after he passed away.

Previously: Documentary about childhood brain tumor research airs in San Francisco, Finding hope for rare pediatric brain tumor, Big advance against a vicious pediatric brain tumorVideo profiles work of pediatric brain tumor researcher and New Stanford trial targets rare brain tumor

Media, Stanford News

On the scene with Discovery’s MythBusters

On the scene with Discovery's MythBusters

For all you MythBusters fans out there, tonight’s season premiere – with Adam and Jamie celebrating the show’s 10th anniversary with the myth that started it all, about the JATO Rocket Car - may be of interest. This will be Adam and Jamie’s third attempt to find out whether a car with a jet assisted take off rocket, or JATO, attached to it can “speed up to 300 miles per hour, become airborne, and impact with the side of a cliff.”

And why are we mentioning this on Scope? Because the part where Adam gives a lecture to a room full of students was filmed here on the medical school campus. My colleagues and I were at the scene back in February.

Photo by Jerome Macalma

Aging, Media, Research, Technology

How social media and online communities can improve clinical care for elderly patients

A past report from the Pew Internet & American Life Project shows that older adults have enthusiastically embraced social media tools. Now comes new research indicating that social media and online communities can provide valuable support for elderly patients in managing their health. Consumer Affairs reports:

“For me, it was interesting to learn that there is evidence for a large potential of social media in clinical practices,” said [Dr. Anja Leist of the University of Luxembourg]. “Older adults can use social media to access health-related information and engage in patient-to-patient-doctor conversations. There are many online forums where people in difficult life situations, such as informal caregivers of a spouse with dementia or individuals with depression, can exchange thoughts as well as receive and provide social support.

“Other positive consequences are that lonely adults can overcome loneliness through contact to family and friends and other users with similar interest,” Leist said.

However, researchers cautioned that several challenges need to be addressed before social media can be used in a clinical setting to help manage patients treatment, such as protecting personal health information and assisting seniors in identifying accurate online sources for medical information.

Previously: Study shows Internet can help raise awareness about cancer prevention, A look at social-media use among psoriasis patients and Patient online peer group offers community, drives research

Media, Medicine and Society

Advice for physicians when interacting with patients online

A position paper recently released by the American College of Physicians (ACP) and the Federation of State Medical Boards (FSMB) urges health-care providers to carefully consider their actions when using social media or other forms of electronic communication. From a post today on the news@JAMA blog:

To help physicians use social media and other digital communication tools in ways that are more beneficial and less likely to cause harm, the ACP and FSMB produced the current position paper. The paper emphasizes the importance of following the same ethical standards for maintaining the physician-patient relationship, confidentiality, patient privacy, and respect for individuals online or offline. It also recommended that physicians:

  • Create separate personal and professional accounts for social media and other interactions online.
  • Use e-mail only to communicate with patients with whom they have an established physician-patient relationship and only with proper patient consent.
  • Manage their online reputation by periodically searching for their name and creating a profile page of information that will likely be the first item to come up in such a search.
  • Be aware that online comments can have lasting effects on a career.

Authors of the paper note in their conclusion that digital communication offers both opportunities and challenges for practitioners, trainees and medical students and the conversation about how health-care providers should use social media and online networks to connect with patients is only just beginning.

[These tools] offer innovative ways for physicians to interact with patients and positively affect the health of communities, but the tenets of professionalism and of the patient–physician relationship should govern these interactions. Institutions should have policies in place on the uses of digital media. Education about the ethical and professional use of these tools is critical to maintaining a respectful and safe environment for patients, the public, and physicians. As patients continue to turn to the Web for health care advice, physicians should maintain a professional presence and direct patients to reputable sources of information.

The ACP and the FSMB recognize that emerging technology and societal trends will continue to change the landscape of social media and social networking and how Web sites are used by patients and physicians will evolve over time. These guidelines are meant to be a starting point, and they will need to be modified and adapted as technology advances and best practices emerge.

Previously: How, exactly, can Twitter benefit physicians?, How can physicians manage their online persona? KevinMD offers guidance, 33Charts’ Bryan Vartabedian talks about physician blogging and A guide to the social web for physicians

Stanford Medicine Resources: