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Chronic Disease, In the News, otolaryngology, Patient Care

A look at one woman’s long journey to diagnosis and treatment of rare disorder

VertigoThis week’s Medical Mysteries column in The Washington Post tells the story of a woman who lived with debilitating vertigo and odd tinnitus. Baltimore’s Rachel Miller lived with dizziness, the exaggerated sound of her heart and breathing and even anomalies with her vision for five years before she was diagnosed and treated. Many of the doctors she saw dismissed her symptoms as psychosomatic and Miller even went through a period when she stopped seeing doctors for her condition. Miller described her travails this way:

“I had started to feel like a person in one of those stories where someone has been committed to a mental hospital by mistake or malice and they desperately try to appear sane,” recalled Miller, now 53. She began to wonder if she really was crazy; numerous tests had ruled out a host of possible causes, including a brain tumor. Continuing to look for answers seemed futile, since all the doctors she had seen had failed to come up with anything conclusive.

But then she went to see David Zee, MD, who diagnosed her strange symptoms as a rare disorder called superior canal dehiscence syndrome (SCDS), when a small hole or a thin area of the temporal bone allows the fluid of the inner ear to touch the brain, transmitting sounds from the rest of the body, like our heartbeat or breathing, or even the movement of our eyeballs. John Carey, MD, operated on Miller, filling the small hole with bone and other tissue from the skull. As the piece notes, both Carey and Zee trained with Lloyd Minor, MD, now dean of the Stanford School of Medicine, when he was at Johns Hopkins University. Minor discovered SCDS in 1995 and developed the surgical treatment that Miller subsequently received in 2012.

Miller has recovered now, with only occasional problems when she gets a cold. But her story points out how difficult it can be to diagnose rare medical problems.

Previously: NIH network designed to diagnose, develop possible treatments for rare, unidentified diseases and Using crowdsourcing to diagnose medical mysteries
Photo by Mikael Tigerström

Genetics, In the News, Medicine and Society, Research

James Watson to put Nobel medal on the auction block

James Watson to put Nobel medal on the auction block

DNA Template molecular modelLooking for the perfect holiday gift for the science geek in your life? Have an extra $3 million sitting around? If so, you can bid on James Watson’s Nobel Medal, which will be auctioned off by Christie’s on December 4 and is expected to fetch between $2.5 and $3.5 million. Watson, now 86, won the Nobel Prize in Physiology or Medicine in 1962 for deciphering the structure of DNA, along with Francis Crick and Maurice Wilkins. An article in Reuters noted the significance of the medal’s auction and the 1953 finding for which it was awarded:

“It is recognition of probably the most significant scientific breakthrough of the 20th century and the impact of it is only being played out now in the 21st century,” said Francis Wahlgren, international head of books and manuscripts at Christie’s. “Whole industries have developed around it.”

Countless subsequent scientific discoveries in the last half century have their foundation in Watson and Crick’s work. Last year, Francis Crick’s Nobel medal garnered $2.27 million. Watson’s handwritten notes for his acceptance speech will also be auctioned the same day. He plans to donate part of the proceeds from the sales to charities and to scientific research.

Previously: Coming soon: A genome test that costs less than a new pair of shoes, NPR explores the pros and cons of scientists sequencing their own genes, and Image of the Week: Watson and Crick
Photo of thymine template from Watson and Crick’s 1953 molecular model by Science Museum London

Global Health, In the News, Public Health, Research, Science Policy

Gates Foundation makes bold moves toward open access publication of grantee research

Gates Foundation makes bold moves toward open access publication of grantee research

Bill and Melinda GatesLast week, the Gates Foundation announced that it will now require all grantees to make the results of their research publicly accessible immediately. Researchers will only be able to publish their research in scientific journals that make the published papers accessible via open access – which rules out publishing in many prominent journals such as Science and Nature.

Inside Higher Education detailed the new policy:

The sweeping open access policy, which signals the foundation’s full-throated approval for the public availability of research, will go into effect Jan. 1, 2015, and cover all new projects made possible with funding from the foundation. The foundation will ease grant recipients into the policy, allowing them to embargo their work for 12 months, but come 2017, “All publications shall be available immediately upon their publication, without any embargo period.”

“We believe that our new open access policy is very much in alignment with the open access movement which has gained momentum in recent years, championed by the NIH, PLoS, Research Councils UK, Wellcome Trust, the U.S. government and most recently the WHO,” a spokeswoman for the foundation said in an email. “The publishing world is changing rapidly as well, with many prestigious peer-reviewed journals adopting services to support open access. We believe that now is the right time to join the leading funding institutions by requiring the open access publication of our funded research.”

But the Gates Foundation policy goes further than other funding instutions. Once the papers are available publicly, they must be licensed so that others can use that data freely, even for commercial purposes. A news article in Nature explains the change:

The Gates Foundation’s policy has a second, more onerous twist which appears to put it directly in conflict with many non-OA journals now, rather than in 2017. Once made open, papers must be published under a license that legally allows unrestricted re-use — including for commercial purposes. This might include ‘mining’ the text with computer software to draw conclusions and mix it with other work, distributing translations of the text, or selling republished versions.  In the parlance of Creative Commons, a non-profit organization based in Mountain View, California, this is the CC-BY licence (where BY indicates that credit must be given to the author of the original work).

This demand goes further than any other funding agency has dared. The UK’s Wellcome Trust, for example, demands a CC-BY license when it is paying for a paper’s publication — but does not require it for the archived version of a manuscript published in a paywalled journal. Indeed, many researchers actively dislike the thought of allowing such liberal re-use of their work, surveys have suggested. But Gates Foundation spokeswoman Amy Enright says that “author-archived articles (even those made available after a 12-month delay) will need to be available after the 12 month period on terms and conditions equivalent to those in a CC-BY license.”

The Gates Foundation has funded approximately $32 billion in research since its inception in 2000 and funds about $900 million in global health funds annually. That’s a smaller impact than, say the U.S. National Institutes of Health, which funds about $30 billion in health research. But it does represent nearly 3,000 papers published in 2012 and 2013. Only 30 percent of those were published in open access journals.

Previously: Teen cancer researcher Jack Andraka discusses open access in science, stagnation in medicineExploring the “dark side of open access”, White House to highlight Stanford professors as “Champions of Change”Stanford neurosurgeon launches new open-source medical journal built on a crowdsourcing modelDiscussing the benefits of open access in science and How open access publishing benefits patients
Photo of Bill and Melinda Gates by Kjetil Ree

Medicine and Society, Patient Care, Technology

Advice for young doctors: Embrace Twitter

Advice for young doctors: Embrace Twitter

9093733888_79ccacf171_zYoung doctors have to juggle a huge workload, so it’s not surprising that many don’t use Twitter or other social media. But Brian Secemsky, MD, an internal medicine resident at the University of California, San Francisco recently wrote a story on Huffington Post outlining the benefits of the twitter-verse for young physicians. He notes that Twitter can serve as a good source of medical knowledge and writes:

By choosing a good mix of these medical profiles, especially those that tweet links to high-yield content, you are able to create an individually tailored and constantly updated curated source of medical information, freely available at any time.

(@StanfordMed is one of those profiles, in our humble opinion)

He also points out that Twitter is a good way for up-and-coming physicians to interact with others in their specialty and a place to for them to voice opinions about topics important to them. Also, these days, doctors have a presence online whether they plan to or not, so it’s best to take control of that image. Secemsky writes:

Whether you like it or not, your professional image will likely end up on the Internet. It may be through the increasing patient use of physician rating websites or your own institution displaying your professional profile and accomplishments. It will be difficult to avoid the impact of the online community in your medical career.

Previously: How can health-care providers better leverage social media to improve patient care?More reasons for doctors and researchers to take the social-media plungeSubjects for doctors to avoid when using social media, How, exactly, can Twitter benefit physicians? and How can physicians manage their online persona? KevinMD offers guidance
Photo by Kooroshication

Global Health, Pregnancy, Stanford News, Women's Health

Stanford undergrad uncovers importance of traditional midwives in India

Stanford undergrad uncovers importance of traditional midwives in India

IMG_0348Lara Mitra grew up taking regular vacations with her family in her ancestral home, the state of Gujarat in India, but those short trips barely prepared her for her first long-term stay. She says the 10 weeks she spent studying maternal delivery practices were eye opening in many ways. The work she did while there made a big enough impact that it landed her on a list of 15 impressive Stanford students featured in Business Insider last month.

During the summer between her sophomore and junior years, in 2012, Mitra secured a human rights summer fellowship through the Stanford McCoy Family Center for Ethics in Society. She worked with the Self-Employed Womens Association (SEWA), a large non-profit organization in India that helps women become economically self-sufficient, but also gathers other information about the well-being of women in the country. Mitra worked with SEWA officials to design a study looking at how often women in Gujarati villages used hospitals to deliver their newborns instead of delivering at home. Most home deliveries are carried out with the help of a dai, a village local who acts as a midwife but usually doesn’t have formal training.

Maternal mortality rates in India are still alarmingly high, so government agencies have started incentive programs such as offering free ambulance service to and from hospitals for laboring mothers and paying mothers to deliver in a hospital instead of at home, and pays dais to bring laboring mothers to hospitals. In light of all these incentives, it was unclear how often women were still delivering at home. And if they weren’t, Mitra says the question was “Are these dais, these midwife figures still useful? Is there still a job for them?” Mitra was excited to be doing the critical research and says, “It was the first time I wasn’t working in someone else’s lab and designed my own study.”

She found that women were in fact taking advantage of the government programs and delivering more often in hospitals, but the dais still played a critical role. In some situations, such as emergency deliveries, dias stepped in and delivered the children before mother and child were taken to the hospital for examination. Also, unlike in Western countries, husbands don’t play as intimate a role in the delivery, so the dai served as “birth coach” at the hospital, too. Dais also helped with prenatal and post-delivery care. Out of 70 women Mitra interviewed in 15 villages surrounding the Gujarati city of Ahmedabad, 69 said dais still served a useful role.

“More significantly, the trust women had in the dai couldn’t be replicated in doctors,” says Mitra. “Dais were part of a support system for women. The dai would do informal check-ups, and could tell if a C-section would be necessary.”

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Parenting, Pediatrics, Stanford News, Technology

Using texting to boost preschool reading skills

Using texting to boost preschool reading skills

Stanford researchers find promising results from program that uses text messages, like this one, to support parents in helping their children learn to read.

A new program that sends weekly texts to parents to  remind them to engage in simple activities to boost their preschooler’s literacy skills appears to help children read. The program, called READY4K! and developed at the Stanford School of Education by education professor Susanna Loeb, PhD, and graduate student Benjamin York and tested at preschools at the San Francisco Unified School District, underwent an 8-month pilot conducted in 2013-2014. In a release describing the pilot program, Loeb described the challenges faced by parents:

The barrier to some of these positive parenting practices isn’t knowledge or desire, but it’s the crazy, busy lives… It’s difficult to have the time or focus to make all these choices as parents, and we’re helping parents do what they know they should do and what they want to do.

The program enrolled 440 parents, half of whom got literacy building tips by text and the other half got placebo announcements about the district. Parents who received literacy tips were more likely to engage in literacy activities such as reading to their children, reviewing rhyming words and playing word puzzles. Moreover, the authors note in a report that the preschool-age children scored higher on literacy assessment tests at the end of the pilot program than those whose parents had not gotten weekly texts. In the release, a representative of SFUSD notes:

I believe that all families want to be involved in their child’s learning, but many feel they don’t have the time or perceive that supporting their child’s learning might be labor intensive or something that the teacher is better at. The texting program offered some simple nuggets around literacy strategies and validated that families do want to be involved, if given information that is easy to receive and useful.

The READY4K! program was developed with accessibility and scalability in mind. York and Loeb carefully parsed early childhood literacy standards from the state into text-size bites, with the aim that they would be helpful and not add another layer of stress to the already busy parents’ lives.

SFUSD has expanded the program this year to all preschool and kindergarten parents. Loeb and York have heard from other interested school districts and have also added early math skills into the weekly texts.

Previously: Reading, book sharing less common in immigrant families, Stanford study finds, Researcher shows how preschoolers are, quite literally, little scientists and This is your 4-year-old on cartoons
Photo by L.A. Cicero/Stanford News Service

In the News, Mental Health, Patient Care

Imagining voices: A new movement is using drug-free ways to treat auditory hallucinations

Imagining voices: A new movement is using drug-free ways to treat auditory hallucinations

Artistic_view_of_how_the_world_feels_like_with_schizophrenia_-_journal.pmed.0020146.g001The idea of hearing voices, or auditory hallucinations, is an experience that frightens many of us. It can be seen as a sign that you are no longer in control of your mind. Auditory hallucinations are also a symptom of schizophrenia, and those with the disease often hear voices which are hostile, mean and disturbing. But in Europe, a small band of clinicians, led by the Dutch psychiatrist and president of Intervoice, Marius Romme, MD, PhD, is exploring new ways to treat the problem of hearing distressing voices. A recent interview with one of Romme’s colleagues, Dirk Corstens, MD, and two of his patients, was featured in The Atlantic.

Stanford anthropologist Tanya Luhrmann, PhD, has worked extensively with people who hear voices, and a recent study she conducted compared the experiences of psychotic patients with auditory hallucinations living in three very different locales – San Mateo, California; Chennai India; and Accra, Ghana. Her team found that the voices of Indian and Ghanaian patients were more likely to be playful and benign, whereas those of U.S. patients were on average more threatening.

When Luhrmann took time to talk with me to discuss the implications of her research and the new approach, which calls itself the Hearing Voices movement, she noted early on that although the treatments espoused by the new movement won’t work for everyone, “The Hearing Voices approach is very important and has an important kernel to it.”

Some of what the group advocates is controversial. “They often reject the idea of schizophrenia, are hesitant about medication, and have a model of hearing voices that identifies sexual trauma as the most important cause of hearing voices,” she says. But a growing body of scientific evidence shows that it may be useful to teach people to interact with their voices.

The Hearing Voices movement, says Luhrmann, advocates seeing the voices as meaningful, treats them as people, respects the voices and encourages patients to interact with them with the help of a trained clinician. One of the patients featured in The Atlantic piece described how he learned to work with the voices he heard:

[Dr. Corstens and I] started to work with each other five years ago, or more. I was around 20 years old. It took about two years of work to actually figure out what the relationships were, what the triggers for the voices were, and what feelings are coupled to these voices. Once you start to learn to express yourself and work out these problems on your own, the voices don’t have to act out their part. Now, when I hear voices, I know what triggered them. I ask, “What is happening with me? What am I neglecting in my own emotions?” Does that make sense?

Luhrmann says that while more research needs to be done, it seems that some patients appear to benefit and the voices they hear diminish, or at least become less aggressive and intrusive. But she cautions that the method may not be appropriate for all patients. “I think it’s important to remember that schizophrenia is a difficult heterogeneous experience,” she says. “It’s pretty clear, even at this early point, that these new techniques don’t work for everyone.” At the same time, she points out, research on related practices like cognitive behavioral therapy has been shown to ease the severity of the voice-hearing experience.

The new movement is mostly centered in European countries at the moment, but Luhrmann notes that it’s growing fast in a grassroots kind of way, somewhat in the way Alcoholics Anonymous grew in the last century. She predicts that some of the approaches used by the group will probably be used among patients with schizophrenia here in the U.S. in the next decade.

Previously: The link between mental-health conditions and cardiovascular diseaseNew thinking on schizophrenia, it’s the mind, body and social experience and Study shows meditation may alter areas of the brain associated with psychiatric disorders
Image by Craig Finn

Global Health, Immunology, Pregnancy, Public Health, Stanford News, Technology

Stanford-developed smart phone blood-testing device wins international award

Stanford-developed smart phone blood-testing device wins international award

When I worked as an epidemiologist, one of my jobs was with a program that prevented perinatal hepatitis B infections. That’s when a woman with a chronic hepatitis B infection passes it on to her baby. Babies are more likely than almost any other group to develop chronic infections that can cause them years of health problems and will most likely cut their lives short.

In the U.S., most states have comprehensive testing programs to detect pregnant women with infections and strict protocols that require delivery hospitals to treat babies born to them with vaccination and antibodies to prevent infection with the virus. But a program like this requires a huge administrative and laboratory investment – and in many poverty-stricken parts of the world, this simply isn’t possible. In fact, in California, the vast majority of cases identified by the prenatal testing program are women who were born outside the United States, including many from Asia.

So when I heard the recent news that a team of four Stanford graduate students had won the Nokia Sensing XCHALLENGE, an international competition to for diagnostic devices, for a mobile test that could detect hepatitis B infections, I was pretty impressed and curious about how it could be implemented in those places. The competition is run by XPrize, the same group that has run several competitions for space exploration, and others for super-fuel efficient vehicles and ocean clean-up efforts.

The mobile version of the winning test was one of five awarded top prizes among 90 entrants. It was developed by engineering PhD candidates Daniel Bechstein, Jung-Rok Lee, Joohong Choi and Adi W. Gani, building on work previously done by Stanford professor of materials science and engineering Shan Wang, PhD, and Stanford immunologist  Paul Utz, MD. The device works because magnetic nanoparticles are grafted onto two biological markers: the hepatitis B virus and the antibody that our bodies make in response to the virus. Current tests for hepatitis B requires a full laboratory facility. A Stanford press release describes the device:

The students used a diagnostic strip that takes a finger prick of blood. The patient’s blood flows into a tiny chamber where it mixes with magnetic nanoparticles to form magnetically tagged biomarkers.

The test strip is inserted into a small magnetic detector… The smartphone is plugged into the detector, and its microprocessor helps to perform the test. It takes only a few minutes.

If the test finds the hepatitis B antigen in the blood, the patient is infected and needs treatment. For a newborn with an infected mother, the child needs both vaccination and antibody therapy.

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Ethics, Health Policy, In the News, Medicine and Society, Transplants

Moving the needle on organ donation

Moving the needle on organ donation

For the thousands of people on organ donation lists, news of an available heart, or lungs, or liver can’t come soon enough. But many don’t get that call in time. According to a new feature on The Atlantic’s website, 21 people die waiting for a transplant every day. That works out to more than 7,600 patients every year.

Unfortunately unless you’re personally touched by the issue… you don’t really think about it

Although many people say they support organ donation, in many countries, only a minority actually register as organ donors. (“Unfortunately unless you’re personally touched by the issue, unless you have a child that gets a virus and suddenly needs a new heart, you don’t really think about it,” one expert says in the piece.) It’s a paradox many people in the field are trying to unravel. The reasons they’ve uncovered so far include mistrust of medical professionals: Some people believe that if a medical team finds out that you’re an organ donor, they won’t work as hard to save your life, in order to harvest your organs. And how much TV a person watches can influence how much he or she trusts doctors. One study found that people who watched more of the TV series Grey’s Anatomy were more likely to mistrust doctors and nurses.

Religion also influences the picture, probably because of concepts of bodily integrity in the afterlife. Catholics are less likely to donate their organs, even though the Vatican officially supports organ donation.

So what can be done about the organ shortage? Some groups are working on solutions, as highlighted in the piece:

“What we’re trying to do in New York is move the cultural needle on the issue,” says Aisha Tator, executive director of the New York Alliance for Donation. “Organized tissue donation should be a cultural norm like we did with bike helmet and seatbelt interventions.” Her organization isn’t the only one. Throughout the United States there have been a smattering of recent educational campaigns and studies on their efficacy. Campaigns have targeted the young, the oldnursesDMV employees, and ethnic minorities who tend to donate less than white Americans or white Brits.

Another, more drastic change is to shift the U.S.’s current opt-in system to one that requires people to opt-out. Many experts point to Spain, which has an opt-out system – and one of the highest rates of organ donation. But the logistics of such a system would probably be difficult, best, to implement.

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Chronic Disease, Obesity, Parenting, Pediatrics

Getting a handle on screen time: tips for parents

Getting a handle on screen time: tips for parents

child watches TV

Most parents know that they should keep screen time to a minimum, but how much is too much? Moreover, with the advent of many educational apps for tablets and smartphones, it’s easy as a parent to get confused about managing their childrens’ use of televisions, computers and tablets. Watching “Frozen” for the hundredth time is clearly entertainment, but what about playing with a Dora the Explorer app that teaches vocabulary? Should that count against a child’s screen time “budget?”

The Lucile Packard Children’s Hospital Stanford blog, Healthier, Happier Lives, had a post earlier this week that offers concrete tips from Thomas Robinson, MD, MPH, director of Packard’s Center for Healthy Weight. Robinson notes that educational screen time doesn’t need to count toward entertainment screen time, which he recommends keeping to less than an hour a day. But he cautions that parents should distinguish between real educational programs and entertainment disguised as education.

He also says that it’s easier to get kids to follow screen-time rules if parents are judicious about their own screen use (this includes time in front of a computer or with a smart phone, as well as TV time). One of the key reasons to turn off the TV (and other screens) is to avoid bad habits associated with screen time like eating high-fat, high-sugar snacks, especially while in front of a TV or computer. Another is simply to get kids to move more and be more active.

The bottom line? Robinson says:

More than anything else, just having family rules about how much, what, when, where, and with whom is the most important step in making screen time and technology work for your family, instead of against it.

Previously: Examining the effects of family time, screen time and parenting styles on child behavior, Childhood obesity expert to parents: Reduce your child’s screen time and Study: Too much TV, computer could hurt kids’ mental health
Photo by Vidmir Raic

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