Finding Risks, Not Answers, in Gene Tests

Jennifer was 39 and perfectly healthy, but her grandmother had died young from breast cancer, so she decided to be tested for mutations in two genes known to increase risk for the disease.

When a genetic counselor offered additional tests for 20 other genes linked to various cancers, Jennifer said yes. The more information, the better, she thought.

The results, she said, were “surreal.” She did not have mutations in the breast cancer genes, but did have one linked to a high risk of stomach cancer. In people with a family history of the disease, that mutation is considered so risky that patients who are not even sick are often advised to have their stomachs removed. But no one knows what the finding might mean in someone like Jennifer, whose family has not had the disease.

It was a troubling result that her doctors have no idea how to interpret.

Such cases of frightening or confusing results are becoming more common because of a big recent change in genetic testing for cancer risk. Competing companies have hugely expanded the array of tests they offer, in part because new technology has made it possible to sequence many genes for the same price as one or two. Within the next year, at least 100,000 people in the United States are expected to undergo these tests. The costs, about $1,500 to $4,000, are covered by some, but not all, insurers.

Various efforts are underway to interpret mutations and compile them in publicly available databases; one of the latest is an online registry to which patients can upload their own data. Eventually, they will be able to see how many other people have the same mutation, and how many get cancer. Called Prompt, for Prospective Registry of Multiplex Testing, it was created by Memorial Sloan Kettering, the University of Pennsylvania, the Mayo Clinic and the Dana-Farber Cancer Institute. Several genetic testing companies are also helping to promote it.

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Originally published in The New York Times

Is Social Networking Killing You?

Well, no, probably not. Or at least, not literally. But two British scientists have recently suggested that spending all day, and — admit it — much of the night networking on a computer might in fact be bad for your body and your brain. No less an authority on the brain’s workings than Susan Greenfield, a professor of pharmacology at Oxford University and the director of the Royal Institution of Great Britain, told a British newspaper on Tuesday that social networking sites remind her of the way that “small babies need constant reassurance that they exist” and make her worry about the effects that this sort of stimulation is having on the brains of users. Lady Greenfield (she’s a neuroscientist and a baroness) told the Daily Mail: "My fear is that these technologies are infantilizing the brain into the state of small children who are attracted by buzzing noises and bright lights, who have a small attention span and who live for the moment."

Originally Published in the New York Times

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To Gather Drug Data, a Health Start-Up Turns to Consumers

SAN FRANCISCO — For years, Thomas Goetz had been a spirited armchair advocate of the use of digital technology and data to improve health care. At Wired magazine, where he was executive editor, Mr. Goetz assigned and wrote articles on the subject. He organized conferences, lectured and wrote a book in 2010, “The Decision Tree,” which hailed a technology-led path toward personalized health care and better treatment decisions. In early 2013, just as he was leaving Wired, Mr. Goetz met Matt Mohebbi, a Google engineer who shared his interest in technology and health. Their conversations continued for months, and prompted an epiphany.

“It struck me that I could help make it happen, not just write about using data to personalize and improve health care,” said Mr. Goetz, who has a master’s in public health from the University of California, Berkeley.

Originally Published in the New York Times

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Avoid The Rush! Some ERs Are Taking Appointments

Three times in one week, 34-year-old Michael Granillo returned to the emergency room of the Northridge Hospital Medical Center in Southern California, seeking relief from intense back pain. Each time, Granillo waited a little while and then left the ER without ever being seen by a doctor.

"I was in so much pain, I wanted to be taken care of 'now,' " says Granillo. "I didn't want to sit and wait."

But on a recent Wednesday morning, he woke up feeling even worse. This time, Granillo's wife, Sonya, tried something different. Using a new service offered by the hospital, she was able to make an ER appointment online, using her mobile phone.

When they arrived at the hospital, he was seen almost immediately.
Hospitals around the country are competing for newly-insured patients, and one way to increase patient satisfaction, they figure, might be to reduce the frustratingly long wait times in the ER. To that end, Northridge and its parent company Dignity Health started offering online appointments last summer; since then, more than 22,000 patients have reserved spots at emergency rooms in California, Arizona and Nevada.

Link to the full article

Originally published on NPR

Defibrillation in the movies: A missed opportunity for public health education

Defibrillation with manual defibrillators in the health care setting and automated external defibrillators (AEDs) in public areas can decrease mortality from cardiac arrest.  Public knowledge of how to use AEDs is limited and prior work has demonstrated that the public has concerns about using AEDs.  Communicating accurate messages about defibrillation could improve bystander response and save lives.

Movies impact viewers’ perspectives and behaviors, and with an annual global box office of more than $32 billion, have significant reach worldwide. This entertainment medium also represents an opportunity for educating the public about defibrillation.

In this study, we sought to (1) characterize defibrillation and cardiac arrest survival outcomes in movies, (2) compare resuscitation actions performed in movies with actions outlined for the public to follow in the chain of survival and targeted by the American Heart Association (AHA) Emergency Cardiovascular Care (ECC) 2020 Impact Goals, and (3) compare cardiac arrest survival outcomes in movies with survival rates reported in the literature and targeted by the AHA ECC 2020 Impact Goals.

Via Resuscitation

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New 'cool videos' from NIH look at Alzheimer's, heart attacks, MS, coral reefs

Francis Collins, physician and geneticist, is widely known as director of the National Institutes of Health, former director of the Human Genome Project and an outspoken advocate of reconciling science with belief in Christianity.

He’s less known as a blogger, but he’s been posting fairly regularly for almost two years at directorsblog.nih.gov. Mostly he highlights new research into a wide range of topics: childhood asthma and teen depression, obesity and brain research, and, recently, the genomics of and potential vaccine against Ebola.

For the past few weeks, he’s also been posting a series of “Cool Videos,” drawn from a competition sponsored this summer by NIH. They’re short, usually funny, and comprehensible — to varying degrees — to the nonprofessional viewer.

Link to article and videos here.

via The Washington Post

Medical Labs Make Test Results Easier for Patients to Understand

As more patients gain direct access to lab reports and test results, health care providers are offering new tools to help them navigate the maze of numbers and use the data to better manage their own care.

Individual patients now can see their results on a wide variety of medical tests including complete blood counts, urinalysis and allergy tests, under a federal rule that went into effect in April and pre-empted a number of state laws prohibiting disclosure to individuals. The results must be available on request within 30 days, no physician's authorization required. Laboratories have until Oct. 6 to comply.

Quest Diagnostics, which provides diagnostic information services to about 30% of U.S. adults a year, launched a new secure patient website, MyQuest by Care360, when the federal rule went into effect on April 7. Patients can view their lab results on the site at no charge within 48 to 72 hours in most states, or get them on a recently enhanced mobile app.

Rather than showing patients copies of the raw lab reports typically sent to doctors, Quest now offers graphs and other visual depictions of results for common markers like cholesterol and blood sugar, putting them in relation to reference or normal ranges and including links to more detailed information.

Link to the full article

Originally published in The Wall Street Journal

How an anonymous Twitter sleuth may have solved a Philadelphia hate crime (and restored our faith in the Internet)

Last Thursday, a little before 11 p.m., a group of “clean cut and well-dressed” 20-somethings strolling through Philadelphia’s moneyed Rittenhouse neighborhood called gay slurs at two men before launching an attack that sent both men to the hospital.

Four days later, Philadelphia police posted a surveillance video of the group on Youtube.

And mere hours after that, an anonymous Twitter user with the handle@FanSince09 announced that he’d found the perpetrators … entirely through social media.

Link to full article

Originally published in The Washington Post

In Practice: The Yelp Phenomenon

Patients can complain about their medical experiences on Yelp, snap photos of doctor's offices for their Instagram account, and even post pictures of a doctor conducting an exam to Facebook, all "invasions" of privacy that would be actionable if it were a doctor posting about a patient.

"There are important issues when it comes to your online reputation, such as the dissemination of less than accurate information about one's practice or professionalism," said Don S. Dizon, MD, medical oncologist in the Gynecologic Oncology service at Massachusetts General Hospital's Cancer Center, and past chairman of the Integrated Media and Technology Committee for the American Society of Clinical Oncology.

Full article 

Via MedPage Today

$1 Million Longevity Prize Seeks To "Hack The Aging Code"

Palo Alto Prize (www.PaloAltoPrize.com), a newly established Silicon Valley-based initiative for health-related incentive prize competitions, today announced the launch of the $1 million Palo Alto Longevity Prize, challenging teams from all over the world to "hack the aging code" to improve our health and extend lifespan.

A launch event at the Golden Gate Club in San Francisco featured the unveiling of the 11 teams that have signed up to compete. Additional teams are eligible to apply for the prize until June 15, 2015.  The event included a presentation by Eric Weinstein, a Managing Director at Thiel Capital, an investment firm founded by Peter Thiel, as well as a panel discussion with team leaders.

Full article

Via Yahoo Finance

The OKCupid data blog is back, in book form

In 2010 Christian Rudder, one of the founders of OKCupid, started a blog to accompany his massively popular dating site. Called OKTrends, it was an under-the-hood look at the vast amounts of self-reported data he and his colleagues had access to as the administrators of a site where millions of people answered extensive questionnaires, filled out in-depth profiles, and messaged potential partners.

 On OKTrends, Rudder made ample use of his Harvard math degree, pumping out pie charts and line graphs to bolster observations like, "heavy Twitter users masturbate more often" than light Twitter users and "black people are more than twice as likely to mention their faith in their profiles" as people who identify as white, asian, or hispanic. But the much-loved blog went dormant after less than 12 months.

Originally Published at The Verge

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6 cool healthcare apps and wearables from PennApp hackathon

Apple’s watch dominated headlines last  week. At the PennApps hackathon over the weekend, one team demonstrated that healthcare applications arising from wearable hacks can excite interest. The healthcare apps, wearables and devices developed in the technology laboratory through a national gathering of university students yielded some interesting takes on how to motivate and produce healthier behavior. Some used what seemed like punishment techniques to change behavior. Others used technology from sponsors such as IBM, Intel, Jawbone and others to go beyond the expected.

Read the full article here.

via MedCity News

IBM's Watson Will Match Cancer Patients With Trials at Mayo Clinic

In 2011, IBM’s Watson supercomputer bested 74-time "Jeopardy!" champion Ken Jennings. The machine, which had taken four years to develop, was a first of its kind: a computer that could understand complex questions, answer them and learn from its mistakes.

But for IBM, developing a cognitive computer—one that can process and contextualize natural language—wasn’t just about winning a game show. From the beginning, the project has been about solving information-intensive puzzles and making everything from banking and real estate to employment and medicine function more efficiently.

This week, IBM announced a partnership with the Mayo Clinic that will use Watson’s smarts to match Mayo patients with clinical trials for which they might be eligible, an initiative that will save time and, hopefully, lives.

Read the full article here.

via Smithsonian.com

Social Networking Strategies That Aim To Reduce Obesity Have Achieved Significant Although Modest Results

The global epidemic of obesity continues to escalate. Obesity accounts for an increasing proportion of the international socioeconomic burden of noncommunicable disease. Online social networking services provide an effective medium through which information may be exchanged between obese and overweight patients and their health care providers, potentially contributing to superior weight-loss outcomes. We performed a systematic review and meta-analysis to assess the role of these services in modifying body mass index (BMI). 

Our analysis of twelve studies found that interventions using social networking services produced a modest but significant 0.64 percent reduction in BMI from baseline for the 941 people who participated in the studies’ interventions. We recommend that social networking services that target obesity should be the subject of further clinical trials. Additionally, we recommend that policy makers adopt reforms that promote the use of anti-obesity social networking services, facilitate multistakeholder partnerships in such services, and create a supportive environment to confront obesity and its associated noncommunicable diseases.

Via Health Affairs

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Instagram for doctors: How one app is solving medical mysteries

A family-medicine doctor recent saw a 13-year-old with a weird, unidentifiable rash. It wasn't itchy or painful, and the teenage boy hadn't traveled anywhere recently. So the the doctor did what any modern physician would do: he took a photo and uploaded it to an Instagram-style app called Figure 1.

Figure 1 is the brainchild of Josh Landy, an internist from Toronto. He did his residency at Stanford and saw constant, off-the-cuff consults happening in hospital hallways, where doctors would try and talk through the details of a case that was surprising or new to them.

"It can be 4 a.m. when you're working, and you're going to see something that can astonish you," Landy said. "It might be the most classic textbook example of something you don't know about, and it happens when there are not a lot of other people around. So the idea was there has to be a better way to communicate."

Landy started doing research on his fellow residents and found that 13 percent were already using their smart phones to share images with one another via email or text message. What if there was a wider network to share those images and get more input from not just one hospital's residents, but the wider medical community?

Originally published in Vox

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TEDMED Hive companies push limits of digital health innovation

Converting smartphones into cancer diagnostic tools, shrinking the size of vital sign monitoring devices, and helping people with impaired speech find their voice are a few examples of the innovative technology on show at TEDMED this week. With 78 companies pitching digital health innovation technologies between San Francisco and Washington as part of the Hive collection of startups, it’s tough to capture the full scope of their goals and approaches to overcoming challenges in care delivery. But I’ve highlighted a few of them here.

Link to full article

via MedCity News

Curbside Care is bringing doctors to doorsteps

When Wharton MBA student Scott Ames was traveling with his fiancee in Washington, D.C. last fall, a long wait for a simple antibiotic prescription caused a lot of aggravation and sparked the idea for an innovative healthcare start-up, Curbside Care.

Ames’ fiancee was experiencing ear pain, and the only way to get an antibiotic so far away from home was to wait three hours at an urgent care center and pay a hefty bill. A disgruntled Ames knew there had to be an easier way to receive relatively simple medical care.

He asked himself why, if he could hail an on-demand car service from an app on his phone, he couldn’t do the same with a doctor’s appointment. Upon returning to campus, he brought his idea to his Wharton rugby teammate, Grant Mitchell — who had just received his MD from the Perelman School of Medicine and was completing his MBA at Wharton — and together they launched Curbside Care to solve that very problem.

Originally published in The Daily Pennsylvanian

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A Medical Consultation Service on Facebook: Descriptive Analysis of Questions Answered

Social media has changed the way the general public accesses health information [1]. With the increasing use of handheld mobile devices, health information may be readily available to an even larger public, as seen in the United States [2]. Facebook, the social media tool with the widest active user base, has 1.28 billion users as of March 31, 2014 [3]. Health information is distributed and discussed on many social media tools, and one in five Americans uses social media as a source of health care information [4]. Of Facebook users in the United States, 94% have used Facebook to gather information on their health [4]. 

However, user-generated health content on social media is generally inconsistent with clinical guidelines and professional knowledge, and non-biased information can be difficult to obtain [5]. Publicly funded services and institutes have a limited role in distributing health information on social media [6], possibly due to a lack of models for using social media in health information promotion [7,8]. In Finland, information on child health is traditionally delivered by “well-baby” clinics, which offer both general information on health care and address individual needs. At the moment, most of the information is delivered during patient visits and by telephone consultation. The clinics are understaffed with regard to the national recommendations, and this is reflected in their capacity to deliver health information [9]. It is evident that methods to reach a larger population are needed to meet the demand. As in the United States, although no such data exist, it is likely that the use of social media for seeking health information is increasing also in Finland. Stroever et al [10] found that social media was an effective way to communicate child health information to low-income parents. Furthermore, the information was considered reliable if distributed by perceived experts.

Originally Published in JMIR

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Twitter Now Lets Anyone Check How Many People Saw Their Tweets

Twitter analytics are now available to all users.

In June, Twitter began experimenting with opening its analytics dashboard to users outside of its advertisers.

Then, last month, Twitter rolled out an updated analytic dashboard to marketers, verified users and Twitter Card publishers.

The dashboard lets users see how many impressions each tweet has received (how many times users saw the tweet on Twitter), the number of favorites their tweet has received, how many times others have clicked on their profiles, and the number of retweets and replies on a certain tweet. It also shows how many times users engaged with a tweet and what that engagement was.

Now, all users can get access to these types of statistics by visiting analytics.twitter.com.

Originally published on Mashable

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Patient care is a team sport, so UCSF built a social network-inspired platform to reflect that

The University of California San Francisco (UCSF) has been building a secure new clinical communications and collaboration platform, and it’s already being used by hundreds of doctors and other caregivers at UCSF Medical Center.

The product, called CareWeb, gives doctors and other caregivers a social networking-like space where they can keep track of a patient’s care in the hospital. It uses a real-time newsfeed model, which works on both desktop and (iOS) mobile screens.

CareWeb is a tantalizing example of how healthcare providers can apply social media and mobile paradigms in clinical settings to better coordinate care.

“It’s kind of like Salesforce Chatter, but it’s built around the patient,” said Michael Blum, MD, director of the Center for Digital Health Innovation (CDHI), which has been managing the development of the product at UCSF. Chatter is a real-time enterprise communication platform.

Full article

Via MedCityNews