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Events, Pediatrics, Public Health, Research, Stanford News

Countdown to Childx: Q&A with pediatric health expert Alan Guttmacher

Countdown to Childx: Q&A with pediatric health expert Alan Guttmacher

jumpforjoyIt’s just a few weeks until the inaugural Childx conference, a TED-style meeting at Stanford that will highlight innovations in health problems of pregnancy, infancy and childhood. (Conference registration for the April 2-3 event is still open, with details available on the conference website.) Childx is attracting nationally and internationally prominent speakers: keynotes will be given by Alan Guttmacher, MD, head of the Eunice Kennedy Shriver National Institute of Child Health and Human Development, and by Rajiv Shah, MD, former head of USAID.

I spoke recently with Guttmacher about the upcoming conference. Because I spend most of my time working with scientists who focus their attention on specific research niches within obstetric and pediatric medicine, I was interested in getting his take on the “big picture” of these fields. An edited version of our conversation is below.

What are you planning to say in your keynote address at the Childx conference?

Children’s lives are about more than just health. While biomedical research is crucial to improving kids’ lives, we should put it in the larger context of kids’ lives and do not just research that has an impact on health, but also on children’s overall well-being.

Within the health sphere, I’ll talk about several areas where we need more research. We need to study how to do a better job of preventing prematurity, both to gain a better understanding of biological and environmental causes of preterm birth, and also of how to do a better job of employing the knowledge we already have.

Another topic I’ll address is vaccination: How do we both pursue the science of vaccination to figure out how to make more vaccines more effective, and also, how do we work with parents so they make decisions about kids’ lives that are in the best interests of the kids and are evidence based, rather than based on, say, something they recently read on the web?

I’ll also discuss the developmental origins of health and disease. Pediatricians have always been very invested in anticipatory guidance, telling families about the kinds of things to do to prevent future disease for their children. But this goes farther; this is the idea that health factors, not only in childhood but even in utero, have lifelong impact on health. For instance, what happens in pregnancy potentially has large impact on whether someone develops hypertension in their 60s or 70s. We’re beginning to do science that will tell us the connections between early factors and later health, that will actually influence health along the entire age span. It’s an area of very important research.

And I’ll address intellectual and developmental disabilities. We need research to figure out how to more effectively prevent intellectual and developmental disabilities, research to understand how to allow kids who have these disabilities to function more effectively in society, and also research to figure out how to have society function better in the lives of kids with intellectual and developmental disabilities.

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Big data, Clinical Trials, Ethics, Public Health, Research, Stanford News, Technology

Build it (an easy way to join research studies) and the volunteers will come

Build it (an easy way to join research studies) and the volunteers will come

stanford-myheart-counts-iphone6-hero

Just nine days after the launch of Stanford Medicine’s MyHeart Counts iPhone app, 27,836 people have consented to participate in this research study on cardiovascular health.

“To recruit that many patients into a traditional clinical trial would take years and hundreds of thousands of dollars,” said Michael McConnell, MD, professor of cardiovascular medicine and principal investigator for the MyHeart Counts study.

MyHeart Counts was built with Apple’s new ResearchKit, a software development framework that can be used to create apps that turn an iPhone into a research and data collection tool. Leveraging a smartphone’s built-in accelerometers, gyroscopes, camera and GPS sensors, medical researchers can easily and inexpensively collect streams of data on exercise, diet and biometrics. Unlike most traditional clinical trials, which capture only a snapshot of patient data, ResearchKit studies are able to collect data from thousands of participants simultaneously, over long periods of time.

While the potential for this technology to accelerate medical research is tantalizing, the ethical issues of this shift in researcher-volunteer interactions took Stanford researchers and collaborator Sage Bionetworks nine months to work out.

“One of the big challenges in designing this study was to develop an ethical mechanism for informed consent on mobile devices,” David Magnus, PhD, director of the Stanford Center for Biomedical Ethics, told me. “It was essential that volunteers understand the nature of the research and what it means for them.”

The concept of informed consent is an important tenet of any research institution’s commitment to respect individuals and to “do no harm.” Without face-to-face meeting between a researcher and volunteer, there could be misunderstandings about risks, benefits and time commitments.

Stanford bioethicists are on the leading edge of addressing the communications challenges of these new frontiers in medical research. Rethinking long, text-based consent forms, they are exploring alternatives, such as audio, video, animation and interactivity.

For example, a team of bioethicists from Stanford and the University of Washington recently released animated videos that explain comparative-effectiveness research within medical practices to potential volunteers. Next, they’ll be developing media-rich tools to explain the risks and benefits of research that uses electronic medical records and stored biological samples.

To solicit ideas on how to best regulate this brave new world of informed consent, the U.S. Food and Drug Administration just posted draft guidance on “Use of Electronic Informed Consent in Clinical Investigations.” Public comments will be accepted through May 7, 2015.

To sign up for the MyHeart Counts study, visit the iTunes store.

Previously: Harnessing mobile health technologies to transform human healthMyHeart Counts app debuts with a splashStanford launches iPhone app to study heart health and Video explains why doctors don’t always know best
Photo by iMore

Big data, Public Health, Research, Technology

Harnessing mobile health technologies to transform human health

Harnessing mobile health technologies to transform human health

McConnell-YeungAn estimated seven in ten U.S. adults say they track at least one health indicator, and 21 percent of this group use some form of technology to track their health data, according to data from the Pew Research Center. But these figures are likely to skyrocket thanks to health platforms such as Google Fit, Apple’s HealthKit and AT&T ForHealth, which use sensors built into smartphones and wireless fitness devices to record physical activity.

This data deluge is a goldmine for biomedical research and drug development, particularly with the introduction of Apple’s ResearchKit. The software, which powers the Stanford-developed MyHeart Counts app, allows users to better understand their health data while providing researchers the opportunity to access it for future studies.

In a recent Huffington Post article, Ida Sim, MD, PhD, professor of medicine at University of California, San Francisco, noted that such technologies hold the potential to encourage the general public to participate in medical studies and make the research community more collaborative and open. “There’s a new movement in academic research called participatory research, where patients are part of the groups that should be asking: ‘What questions are interesting? What should we test?’” Sim said in the piece. “The public could start seeing research as something that isn’t imposed on [them], but as an activity that we all do together so that we can learn together.”

This May, Sim, who co-directs of Biomedical Informatics at UCSF’s Clinical and Translational Sciences Institute, will speak at Stanford’s Big Data in Biomedicine Conference on how health information collected on mobile devices holds the potential to inform clinical decisions and transform health care. As a co-founder of non-profit Open mHealth, she and colleagues are leading the charge to build open source software that facilitates sharing and integration of digital health data.

Below she outlines how leveraging mobile health data can improve how physicians diagnose, treat and prevent disease and the challenges in facilitating the sharing and integration of this vast treasure trove of data.

What are the large-scale opportunities to harness the rapidly growing reservoir of information to improve biomedical research and human health?

We can use this data to do a variety of things like combining genomic information and behavior data from wearables to discover new insights into health and disease.

We can also move from what works on average to more tailored programs focused on the idea of what works for me. For example, if we employ A/B-like testing with digital health, genomics, and other data combined, we can understand which interventions work for an individual and under what contexts, allowing for more tailored healthcare.

Finally, we can learn about a person beyond their clinical visit – which is only a small slice of their “health pie.” By getting multiple health snapshots, doctors will be able to provide patients with better medical support and preventative strategies that support overall physical and mental well-being.

What are the major challenges in unlocking the potential of digital health data?

When we write a sentence, we construct the sentence with grammar. We use vocabulary to fill in the blanks to give meaning to the sentence. Meaning is lost when either the grammar or the vocabulary is ambiguous or not shared between parties. In a similar way, making sense of data from various digital health devices is challenging when the devices don’t represent data the same way.

Currently, wearable devices and other healthcare tools describe the data they collect using their own languages that are not shared or integrated with other devices. For example, a Wi-Fi enabled weight scale might represent data as “weight: 88” but we have no clue if that means 88 kg, femptograms, lbs, or stones. A calorie counter might represent calories as “calories: 400” but we have no clue if this was calories expended or calories consumed. For clinicians, these kinds of ambiguities are show stoppers that lock up the potential of digital health data.

In addition, data from the devices themselves are stored in silos, meaning that it is not easy for patients or clinicians to combine and view multiple data streams together. Blood pressure from one device isn’t syncing with weight data from another, which can lead to an incomplete picture of a patient’s health over time.

If we strive for greater interoperability with a common language and structure for both understanding and integrating digital health data, we can help to bring clinical and patient needs together for better health-care outcomes.

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Addiction, FDA, Health Policy, Pediatrics, Public Health

Raising the age for tobacco access would benefit health, says new Institute of Medicine report

Raising the age for tobacco access would benefit health, says new Institute of Medicine report

cigarette packToday, the Institute of Medicine released a new report evaluating the public health effects of reducing teenagers’ access to cigarettes and other tobacco products. Right now, in most places in the United States, you must be 18 years old to buy cigarettes and other tobacco products. But a few states and cities have higher minimums, and in 2013, the IOM convened a committee, at the request of the U.S. Food and Drug Administration, to examine the potential effects of a higher minimum legal age for tobacco access across the country.

The committee, which was led by Richard Bonnie of the University of Virginia and included Stanford adolescent medicine expert Bonnie Halpern-Felsher, PhD, reviewed the existing scientific literature on tobacco use in teens. They also devised mathematical models to predict what would happen if the federal minimum legal age were 19, 21 or 25.

The report brief (.pdf) says, in part:

Based on its review of the literature, the committee concludes that overall, increasing the MLA [minimum legal age] for tobacco products will likely prevent or delay  initiation of tobacco use by adolescents and young adults. The age group most impacted will be those age 15 to 17 years. The committee also concludes that the impact of raising the MLA to 21 will likely be substantially higher than raising it to 19. However, the added effect of raising the MLA from 21  to 25 will likely be considerably less.

The parts of the brain most responsible for decision making, impulse control, sensation seeking, and susceptibility to peer pressure  continue to develop and change through young adulthood, and adolescent brains are uniquely vulnerable to the effects of nicotine. In  addition, the majority of underage users rely on social sources—like family and friends—to get tobacco. Raising the MLA to 19 will therefore not have much of an effect on reducing the social sources of those in high school. Raising the MLA to 21 will mean that those who can legally obtain tobacco are less likely to be in the same social networks as high school students.

Although it can take time to fully realize the benefits of reduced smoking, since heart disease, lung cancer and other diseases linked to smoking take decades to develop, the payoff would ultimately be significant, the report adds:

…if the MLA were raised now to 21 nationwide, there would be approximately 223,000 fewer premature deaths, 50,000 fewer deaths from lung  cancer, and 4.2 million fewer years of life lost for those born between 2000 and 2019.

Previously: How e-cigarettes are sparking a new wave of tobacco marketing, To protect teens’ health, marijuana should not be legalized, says American Academy of Pediatrics and UN’s top health official: Anti-tobacco efforts can lead to better health “in every corner of the world”
Photo by Thomas Lieser

Addiction, FDA, Health Policy, Medicine and Society, Public Health, Public Safety

To keep edibles away from kids, marijuana policies must be “fully baked”

To keep edibles away from kids, marijuana policies must be "fully baked"

sanfran031606_fig1_highresDepending on your position, legal marijuana might raise images of stoners on every street corner or of users enjoying a private puff in their backyards. However you probably don’t picture a child munching on a pot-laden brownie she found in her kitchen cupboard.

But as Stanford legal experts Robert MacCoun, PhD, and Michelle Mello, JD, PhD, point out in a commentary published today in the New England Journal of Medicine, the loose state regulation of marijuana edibles creates some unnecessarily and potentially serious public health risks that should concern everyone.

Packaged in brightly colored wrappers, edibles often mimic popular sweets, but they contain a powerful dollop of tetrahydrocannabinol (THC), the chemical responsible for marijuana’s psychoactive effects. Some edibles contain multiple “servings” of THC per package.

Both Colorado and Washington — the two states with legal recreational marijuana — require “child-resistant” packaging and a warning to “keep out of the reach of children.” But edibles remain quite attractive to children, who may confuse them with regular candies and snacks, and potentially deceptive to adults, who may assume one bar is a just one serving. “I look at these packages and I get hungry just looking at them,” MacCoun said.

The edibles are not regulated as either a food or a drug by the U.S. Food and Drug Administration, because the federal government considers marijuana illegal. Legalizing states have been slow to fill the gap, and have done so incompletely, Mello said. “This is sort of a weird space that’s betwixt and between federal and state oversight,” she said.

It’s time for the medical community to get involved, MacCoun said. “Most people don’t understand the brain metabolizes chemicals ingested by mouth differently than those smoked.”

Ingested marijuana offers a delayed high, so people keep eating thinking they are fine. The intoxication lasts longer and is associated with more hallucinations and perceptual distortions, he said. “It’s almost like a different drug.”

For now, the issue is most pressing in Colorado and Washington, but many other states are considering legalizing recreational marijuana, including California, MacCoun said.

“We’re not taking some strong position these products should be banned. Sensible and fairly modest regulations would reduce the risk without greatly restricting people’s freedom to consume these products,” MacCoun said.

Previously: Discussing the American Academy of Pediatrics’ call to put the brakes on marijuana legalization, To protect teens’ health, marijuana should not be legalized, says American Academy of Pediatrics and Medical marijuana not safe for kids, Packard Children’s doc says
Photo by DEA

Cancer, Medicine and Society, Patient Care, Public Health, Videos

March marks National Colon Cancer Awareness Month: The takeaway? It’s preventable

March marks National Colon Cancer Awareness Month: The takeaway? It's preventable

What is the leading, preventable cause of death in the United States? I suppose the headline gave away my punchline, but remembering that colon cancer is both deadly and preventable is a timely exercise during March, which is National Colon Cancer Awareness Month.

Here’s what you need to know: Don’t wait until your colon hurts to come to the doctor. That won’t work. “Polyps and early tumors are often not symptomatic,” said gastroenterologist Uri Ladabaum, MD, in the above Stanford Health Care video.

It’s best to catch cancer 10 years before it appears, making 50 a key age to spot a cancer that often appears in the 60s,  said endoscopy director Subhas Banerjee, MD.

And a prime screening procedure, colonoscopy, “is no big deal,” said oncologist Mark Welton, MD. “They give you a little sedation and the next thing you know is you’re saying, ‘Are we done?'”

If physicians do spot the cancer early — or even later — they can often remove it, the physicians agreed. Chemotherapy and surgery are continuing to improve, making it more likely that patients can continue to live long, healthy lives.

Family history and race can leave you more vulnerable to colon cancer — African Americans are more likely to get, and die from, the disease — but in general, a fruit-and-vegetable packed diet, avoiding smoking and getting regular exercise can help stave off colon cancer.

Previously: The Big Bang model of human colon cancer, Stanford researchers explore new ways of identifying colon cancer and Study shows evidence-based care eliminates racial disparity in colon-cancer survival rates 

Cardiovascular Medicine, In the News, Public Health, Research, Women's Health

A look at why young women who have heart attacks delay seeking care

A look at why young women who have heart attacks delay seeking care

317916781_c8bb9b352e_zHeart attacks kill more than 15,000 women in the U.S. each year and are disproportionately deadly for females under the age of 55. Although several studies, including those by Stanford cardiologist Jennifer Tremmel, MD, have investigated the signs and consequences of heart attacks in men and women, relatively little is known about heart disease in women or why it’s so lethal for young females. And according to new research, misconceptions about the risk factors and signs of coronary heart disease may be why young females are less likely to recognize and seek emergency care for a heart attack.

In the study, published yesterday in Circulation: Cardiovascular Quality and Outcomes, a research team led by Judith Lichtman, PhD, MPH, of the Yale School of Public Health, interviewed 30 women between the ages of 30 to 55  who had been hospitalized for a heart attack. The researchers identified five common themes among the symptoms and treatments of the women they interviewed, and one potentially important finding was that women were unsure they’d had a heart attack so they were hesitant to seek medical treatment.

From an NPR story:

A heart attack doesn’t necessarily feel like a sudden painful episode that ends in collapse, [Lichtman] notes. And women are more likely than men to experience vague symptoms like nausea or pain down their arms.

“Women may experience a combination of things they don’t always associate with a heart attack,” Lichtman says. “Maybe we need to do a better job of explaining and describing to the public what a heart attack looks and feels like.”

Tremmel also provided comment on the study, saying it indicates a need to encourage women to seek help for medical concerns. “This is an ongoing issue in the medical field,” she said. “…We all have to empower women patients, so they know that they need to not be so worried about going to the hospital if they’re afraid there’s something wrong.”

Previously: New test could lead to increase of women diagnosed with heart attack, Heart attacks and chest pain: Understanding the signs in young womenAsk Stanford Med: Cardiologist Jennifer Tremmel responds to questions on women’s heart healthPaper highlights major differences in disease between men and women and Gap exists in women’s knowledge of heart disease
Photo by Simon Mason

Chronic Disease, Health Policy, Public Health, Public Safety, Stanford News

New uses for old polymers: Stanford Engineering team uses surgical glove material to make air filters

New uses for old polymers: Stanford Engineering team uses surgical glove material to make air filters

After visiting China and enduring the stifling air pollution, Stanford engineering professor Yi Cui, PhD, wanted to explore solutions to the problem. This week, his team published a paper in the scientific journal Nature Communications, detailing a new kind of highly effective air filter made out of polyacrylonitrile, a synthetic polymer that is used to make surgical gloves.

The researchers used a relatively new technique called electrospinning, or drawing out microscopically thin threads from a liquid to make a lightweight and fairly transparent filter out of PAN. The filter attracts particles from the air, especially those around 2.5 microns – or PM2.5 – which are among the most dangerous for the human respiratory tract.

The researchers make the case for the new PAN air filter pretty eloquently in a press release:

“It was mostly by luck, but we found that PAN had the characteristics we were looking for, and it is breathtakingly strong,” said Po-Chun Hsu, co-author on the study and a graduate student in Cui’s lab.

. . .

“The fiber just keeps accumulating particles, and can collect 10 times its own weight,” said Chong Liu, lead author on the paper and a graduate student in Cui’s lab. “The lifespan of its effectiveness depends on application, but in its current form, our tests suggest it collects particles for probably a week.”

The material collects 99 percent of air particles for up to a week, but is still 70 percent transparent, so it could be used as a window covering. “It might be the first time in years that people in Beijing can open their window and let in a fresh breeze,” Cui said in the statement.

Previously: The high cost of pollution on kids’ healthStudy shows air pollution may increase heart attack risk more than drug useContinuing pollution restrictions used during Beijing Olympics could reduce cancer rates and New insight into asthma-air pollution link
Video by Kurt Hickman

Chronic Disease, Health Policy, In the News, Pediatrics, Public Health, Sleep

Talking about teens’ “great sleep recession”

Talking about teens' "great sleep recession"

Sleepy Teen Student

We all understand, at some level, that sleep is critical to our health. But there’s a cultural undercurrent that belies that understanding: We tend to glorify the go-getters who can survive on four or five hours of sleep, lauding their productivity and drive. Numerous studies have shown that Americans of all ages – kids, teens, and adults – are not getting enough sleep.

More and more, researchers are warning that lack of sleep can damage our long-term health. Just yesterday, Rafael Pelayo, MD, with the Stanford Center for Sleep Sciences and Medicine, was on KQED’s Forum radio program to discuss a new study looking at some alarming trends in teen sleep habits. The study, titled “The Great Sleep Recession” was published this week in the scientific journal Pediatrics. It showed that over the past 20 years, teens have been getting less sleep. Girls, minority teens, teens in urban areas and of low socioeconomic status were less likely to get at least seven hours of sleep than male, white teens. What’s more, minority teens and low SES teens were likely to report they thought they got enough sleep.

During the show, Pelayo spoke about our relationship with sleep and the challenges of sticking to a “sleep budget”:

When I read the title [of the study] it made me think of Bill Dement, who talks – at Stanford – about a sleep debt and not having enough total sleep. And a sleep debt has been growing and accumulating in people who have used sleep as something as optional in their lives. These students are… modeling after their parents, who are not getting enough sleep… But in the kids, it’s a particularly hard problem for them, they feel pressure to not get enough sleep.

Pelayo went on to say that parents and teens tend to prioritize other things, like homework, over sleep – but what they should be doing is setting aside a certain amount of time for sleep. “If the homework doesn’t get done, it doesn’t get done. They can’t make homework more important than sleep,” he said.

That last statement is a pretty radical suggestion, but if we are to avoid the fall-out from our bad sleep habits, radical changes may be the only solution.

Previously: With school bells ringing, parents should ensure their children are doing enough sleeping, Stanford docs discuss all things sleep, Study shows poor sleep habits as a teenager can “stack the deck against you for obesity later in life” and What are the consequences of sleep deprivation?
Photo by Alberto Vacarro

Health Policy, Medical Education, Public Health, Public Safety

Why I never walked to school: the impact of the built environment on health

Why I never walked to school: the impact of the built environment on health

SMS (“Stanford Medical School”) Unplugged was recently launched as 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.

kids walking to schoolMy California-acclimated body was a little shocked by the 15-degree weather I encountered while visiting my Kentucky hometown over winter break, but I was still determined to bundle up most days and to get outside for long walks with my mom and daughter. One day as we were struggling to catch an opening in traffic to cross the blindly curving road leading out of our subdivision, it occurred to me that the cold was the least of our barriers to getting a little exercise.

“I don’t think I could design a more dangerous place to walk if I tried,” I observed in frustration. Another car whizzed by within a couple feet of my daughter’s stroller. “This town was definitely built for cars, not people.”

For most of my childhood, my family lived right in the middle of town, within about a mile of many of the places a young family might visit on a daily basis. Grocery stores, school, church, the public library, restaurants, the park where I played softball, and my grandmother’s house were all close enough that they should have been an easy walk. But that one mile might as well have been twenty, and I can count on one hand the times I walked to those destinations. I tried a few times, but to get there on foot I’d have to navigate roads lined by steep hills or ditches with no sidewalks or crosswalks. There is one underpass that would require a pedestrian to climb onto a narrow strip of gravel and inch along the wall, close enough to the fast-moving traffic to be unbalanced by gusts from each passing car.

Because of these real physical barriers, the local cultural wisdom took it as self-evident that cars were the only reasonable way to get around. Walking and biking were recreational activities to be done in endless circles around the cul-de-sac, not viable modes of transportation. The risk of walking wasn’t just a theoretical one: Our roads were decorated with a couple of makeshift roadside altars made by the families of teenagers who had died while trying to cross the street. More recently, I was disappointed to read an article confirming my suspicions that cycling in the Southeastern U.S. is drastically more dangerous than in other regions.

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