Technology

There’s a fascinating profile of Larry Smarr, PhD, a physicist turned quantified-self pioneer in Technology Review today. Over the years, Smarr has scrupulously measured and tracked his own biological data using laboratory analysis services and devices that monitor his sleep, fitness and eating habits. The information not only improved his health but lead to a surprising diagnosis. Jon Cohen writes:

Smarr, who directs the California Institute for Telecommunications and Information Technology in La Jolla, dropped from 205 to 184 pounds and is now a fit 63-year-old. But his transformation transcends his regular exercise program and carefully managed diet: he has become a poster man for the medical strategy of the future. Over the past decade, he has gathered as much data as he can about his body and then used that information to improve his health. And he has accomplished something that few people at the forefront of the “quantified self” movement have had the opportunity to do: he helped diagnose the emergence of a chronic disease in his body.

…

On top of his pioneering computer science work—he advocated for the adoption of ARPAnet, an early version of the Internet, and students at his University of Illinois center developed Mosaic, the first widely used browser—Smarr spent 25 years as an astrophysicist focused on relativity theory. That gave him the expertise to chart several of his biomarkers over time and then overlay the longitudinal graphs to monitor everything from the immune status of his gut and blood to the function of his heart and the thickness of his arteries. His meticulously collected and organized data helped doctors discover that he has Crohn’s, an inflammatory bowel disease.

As the story goes on to explain, Smarr plans to go public with his personal health data and is working to convince others to do the same in hopes that crowdsourcing the information will generate new insights about the links between DNA sequences, biomarkers and disease. The article is well worth a read and both illustrates and foreshadows the ongoing digital transformation of medicine

Previously: How the C3N project is working to rewrite the medical script and empower patients and ePatient discusses how web-savvy patients are changing the practice of medicine.
Photo by Spanish Flea

In this interesting TED Talk, Lucien Engelen, the founder and curator of TEDxMaastrict, discusses several emerging technologies that he thinks have the potential to change health care, including a crowd-sourced map of defibrillators.

Engelen is also on the advisory board for the Stanford Medicine X conference this September.

A new social network called AnxietySocialNet aims to help people suffering from anxiety disorders address their symptoms, find information and network with others.

Founded by Salomon Ptasevich, a former anxiety sufferer, the site also hopes to attract friends and family members who may be watching a loved one struggle with anxiety who feel helpless or confused about how to help. In a WebWire news release, Ptasevich explains:

The whole idea behind ASN is to allow people to share their emotions in a safe place and learn from each other’s experiences. We try to encourage users to get themselves out there and conquer their anxiety.

AnxietySocialNet hopes to help sufferers of agoraphobia, social anxiety disorders, obsessive compulsive disorder or any of the other forms of anxiety affecting many. The National Institute of Mental Health estimates that anxiety disorders affect as many as 40 million Americans age 18 or older.

Photo courtesy of Thinkstock Photos

An estimated 11,000 women in the United States are diagnosed with cervical cancer each year, and more than 4,000 women die from the disease annually, according to data from the National Cervical Cancer Coalition. In an effort to reduce these figures, the Cervical Cancer-Free Kentucky Initiative introduced a new Facebook application to raise awareness of the cancer and prevention measures such as screenings and the HPV vaccine.

USA Today reports:

The app is part of the Cervical Cancer-Free Kentucky Initiative’s “Cause the Movement” campaign, which promotes education as well as prevention.

“We want to get the message (to) where we know people are getting their information, and Facebook, Twitter and websites are ‘The Thing,’ ” said Dr. Baretta R. Casey, director of the initiative, which is based at the University of Kentucky.

The Facebook application, which can be found at causethemovement.org, incorporates pictures of users’ Facebook pals into an educational video on cervical cancer. The video is viewed from users’ computer screens.

The Cervical Cancer-Free Kentucky Initiative was created through a partnership between Rural Cancer Prevention Center at the University of Kentucky’s College of Public Health to address cervical cancer rates in the state. GlaxoSmithKline provided unrestricted funding for the project.

Previously: Experts weigh in on recommendation that boys be given HPV vaccine and Only one-third of teenage girls get HPV vaccine to prevent cervical cancer
Photo by Stefan 1981

“A single human brain has more switches than all the computers, routers and Internet connections on Earth,” said Stephen J. Smith, PhD, a Stanford professor of molecular and cellular physiology, as he took a Macworld audience on a breathtaking HD video tour of the most amazing computer of all — the brain.

The audience was clearly moved by the beauty of the short film, which takes viewers on a virtual flight through the cerebral cortex of a mouse. “The finished product, titled Synaptaesthesia, was stunning,” Mauricio Grijalva wrote yesterday in a Macworld piece.

Smith and his team have pioneered a method for directly observing brain circuit development, structure and function called “array tomography.” Developed by a consortium of neuroscientists, computer scientists, and lab technicians from Stanford, Harvard, and MIT, this technique opens up a window on the brain that will provide researchers with insights on how to diagnose and treat neurological diseases such as Alzheimer’s. (Smith’s website also features an animated video of a human brain with Alzheimer’s disease.)

While the techie Macworld audience was primarily interested in the how-to aspects of the film — how his team combined electron microscopy, specialized fluorescent molecules from jellyfish, high-resolution photography, super computers and Apple Computer technologies to create the final animation — Smith also explained why he believes the film is so emotionally appealing:

Human beings are hardwired to love the sight of trees because our evolutionary ancestors survived in trees. The brain is a vast forest of hundreds of billions of tree-shaped neurons — what could be more beautiful? Modern physics and computation have finally given us the ability to glimpse this beauty.

Previously: New imaging method developed at Stanford reveals stunning details and Visualizing the brain as a universe of synapses

Can a sophisticated imaging technique be used to determine whether someone is lying? That’s the intriguing question explored in a Scienceline piece yesterday. And for those interested in more on the issue, Stanford’s Hank Greely, JD, an expert on neuroscience and the law, discussed fMRI technology and the ethical questions surrounding its use in an in-depth 2010 NPR interview.

Previously: Functional magnetic resonance imaging could serve as lie-detector test in civil trial

The challenges facing pediatric surgeons was the focus of a recent segment on KQED-FM’s QUEST. During the show, Sanjeev Dutta, MD, described such challenges as “plumbing problems:”

Dutta is a pediatric surgeon at Lucile Packard Children’s Hospital, in Palo Alto, where he operates on children with these and other problems. He says often, the instruments he uses when he does these surgeries weren’t built for tiny babies. They were made for adults.

“We struggle with instruments that were never designed for the type of patient we are working on, and we adapt.”

Dutta says the issue here isn’t safety. Most of these surgeries are, by now, pretty routine. But pediatric surgeons have to improvise in ways other surgeons don’t.

The segment also highlighted how pediatric surgeons, including Dutta, are collaborating with engineers from SRI International to create tools more appropriately sized for tiny patients.

Two years ago, the U.S. Food and Drug Administration held hearings on regulating how drugs and medical devices under its oversight are promoted through social media and on the web. The agency recently released social-media marketing guidelines (.pdf) for pharmaceutical companies and is currently taking public comments on the proposal.

American Medical News reports:

The draft guidance encourages all responses to unsolicited requests for information, which could include requests from physicians for information on off-label uses for certain drugs, to be made in a nonpublic format.

The agency calls on companies to respond to public requests, such as those sent through Facebook or Twitter, by guiding the requestor to the appropriate personnel or department for private, one-on-one help. The agency said the private responses should be science-based and answer only the question or questions asked.

The guidance does not apply to information or requests received in response to a solicitation by the pharmaceutical or medical device company.

Comments are being accepted until March 26. They can be submitted to Division of Dockets Management (HFA-305), Food and Drug Administration, 5630 Fishers Lane, Rm. 1061, Rockville, MD, 20852.

Over on the Medicine X blog, Julia James has written a great piece on the Collaborative Chronic Care Network (C3N), a five-year project aimed at developing systems that enable patients diagnosed with chronic illnesses to be more engaged in their own health care.

In the post, James tells the story of how the lives of nine-year-old Emily Blosser and her family were turned upside down after she was diagnosed with a severe form of the autoimmune disorder Crohn’s disease. Similar to many patients and caregivers, the Blossers were overwhelmed by the task of managing Emily’s condition and soon felt powerless and isolated from their community of friends and family.

But little did the family know that Peter Margolis, MD, PhD, and Michael Seid, PhD, professors at the Cincinnati Children’s Hospital Medical Center, were already working on a solution for their problem. Funded by a high-risk, high-reward TR01 grant from the National Institutes of Health, Margolis and Seid launched C3N and began building prototype interventions and recruiting clinicians and patients. James writes:

[Emily Blosser and her mother] soon became the subject of an N-of-1 trial. Mother and daughter, along with a clinician and researcher, now function as a tiny investigation unit within a larger, interconnected system. The doctor guides disease management strategies; Emily and her mom complete weekly online surveys about pain and fatigue levels; and a researcher analyzes that data in the context of the larger network of trials.

C3N is currently in its third year, and the team is only now finishing detailed design on its Internet platform. But once this has been built and the project taken to scale, Seid and Margolis envision Emily’s data set combining with millions of others to compose a massive, open-source body of information from which knowledge can be distilled.

If the grand vision is slow-moving, Emily’s story has already been rewritten: She’s not only a patient but a participant in her own health.

The full post offers additional details about this exciting project and is worth taking a moment to read.

Previously: How Regina Holliday uses art to advance the discussion about patients rights, Founder of Diabetes Mine discusses the power of patient communities, ePatient discusses how web-savvy patients are changing the practice of medicine and Stanford Medicine X advisory board announced

The Centers for Disease Control and Prevention’s new finding that 38 million Americans engage in binge drinking is, quite appropriately, causing widespread alarm. But below that headline is an important secondary point: We have been underestimating the rate of binge drinking for a long time because researchers haven’t surveyed cell phone users until now. This year’s survey was the first to include cell phones, and the number of binge drinkers jumped as a result.

There’s an intriguing history here.

The arrival of landlines in virtually every American home was a godsend to survey researchers. A survey researcher could draw a random sample of phone numbers and be confident that it was representative of the U.S. population.

To preserve this representativeness, researchers wouldn’t necessarily survey the person who answered the phone. If you’re old enough to remember growing up in a home with a landline, you’ll know why: who answered the family phone was rarely random. For example, in some homes mom always did it even when dad was home, in other homes dad did it only if he had a teenage daughter and wanted to screen potential suitors, and so on.

Telephone survey researchers would handle this by asking the person who answered the landline phone a randomizing question within the household (e.g., the would ask to speak to the person in the household whose birthday was closest to a randomly chosen date).  This technique combined with the ubiquity of landlines made household landlines a fabulous way to survey random, representative samples of Americans about political attitudes, dietary habits, product purchasing patterns and a million others things, including, of course, drinking patterns.

The emergence of cell phones ruined all that. Particularly when they first became available, people who owned them were a non-representative sample of the population. Since they were usually not shared, you couldn’t “re-randomize” within a group when someone answered as you could on a shared household landline; your only choice was typically the phone owner. In addition, the phone numbers weren’t usually listed so it was hard to get the sample of phones to call in the first place.

For years I’ve been attending meetings of alcohol survey researchers during which colleagues lamented the rise of cell phones as a threat to survey research but couldn’t come up with a solution. Each year their response rates were getting lower, and their samples less representative as younger people opted not to have landlines.

The CDC managed to crack into the cell phone survey game with its latest effort – something for which they should be applauded. (How they got the numbers I don’t know.) The changed picture reflected in this year’s results show the advantage of their method, and show that cell phone surveys are the wave of the future not just for drinking problems but for all the other health and social phenomena that are the focus of survey research.

Addiction expert Keith Humphreys, PhD, is a professor of psychiatry and behavioral sciences at Stanford and a career research scientist at the Palo Alto VA. He recently completed a one-year stint as a senior advisor in the Office of National Drug Control Policy in Washington.

Using Google Flu Trends to monitor Internet search traffic data about influenza could serve as an effective early warning tool and help hospital emergency departments anticipate surges in flu-like cases, according to a report published yesterday in Clinical Infectious Diseases.

In the study (subscription required), Johns Hopkins University researchers recorded and reviewed Google Flu data for Baltimore City as well as patient information for individuals visiting the adult and pediatric emergency departments at Johns Hopkins Hospital from January 2009 to October 2010. According to a university release:

[Researchers] found the correlation between Internet searches and patient volume was most pronounced when researchers reviewed data showing a rise in search traffic for flu information and the number of children coming into the Hopkins pediatric emergency room with what doctors call influenza-like illness or ILI.

Building on these findings, researchers hope to develop a reliable flu surveillance model that emergency departments could use to reasonably predict a spike in the number of flu-like cases. Such a system could help emergency department directors and senior administrators prepare by beefing up staffing or opening up patient annexes.

Previously: Using Facebook to study cardiovascular health, Analyzing H1N1 vaccination rates and attitudes using Twitter data, Facebook app models how viruses spread through human interaction, Mining Twitter data to track public health trends and Following Google Flu Trends, researchers use queries to track MRSA

Past research (.pdf) has shown that keeping a personal diary and other forms of expressive writing can boost a person’s mental and physical health. Now findings recently published in Psychological Services suggest blogging may improve troubled teens’ self-esteem and help them cope with social anxiety and better relate to their friends.

In the study (.pdf), Israeli researchers randomly surveyed high school students about their psychological well-being and selected 161 teens whose questionnaire results indicated they suffered from some level of social anxiety or distress. The participants were divided into several groups. Two groups were instructed to blog about social problems, two more were given the freedom to blog about whatever they wanted, another group was asked to keep a personal diary on their computer and the control group did nothing. Volunteers were assigned to publish blog posts twice a week for ten weeks. Students’ self-esteem, everyday social activities and behaviors were assessed before, immediately after and two months after the 10-week experiment. The Huffington Post reports:

The researchers found that the teens who blogged — as compared to those who did nothing or kept a private diary — displayed greater improvements in self-esteem, social ease, and emotional well-being. The bloggers who wrote specifically about their social difficulties and those whose posts were open to comments showed the most improvement.

Interestingly, the study results showed that the majority of comments posted on participants’ blogs were supportive and positive in nature.

Previously: 9/11: Grieving in the age of social media, Five ways social media may change mental health care and Elderly adults turn to social media to stay connected, stave off loneliness

Researchers at the National Library of Medicine are expanding a project to determine the role computers may play in interpreting and dispensing medical advice using artificial intelligence.

The project, which aims to develop intelligent computerized medical assistants for doctors, originally started with 9,000 medical questions from Stanford University and the University of Minnesota. However, researchers soon learned their efforts required a larger sample size. So they’re partnering with Canada-based AskTheDoctor.com, a free, online medical information site. According to a release:

[Researchers] are using thousands of real-language, unedited medical questions at the National Institutes of Health (NIH) in Bethesda, Maryland to see if computers can interpret the tone and meaning of questions phrased by online patients. The NIH has also been in contact with IBM, discussing the possibility of working with IBM’s Super Computer ‘Watson’ (of Jeopardy fame) to test these questions from AskTheDoctor.com.

Milton Corn, National Institute of Health Deputy Director, noted in the release how AskTheDoctor.com users’ questions were particularly valuable to the computational research project because they authentically reflected the language commonly used by patients.

Previously: Foundation launches contest to develop AI physician

This TEDMED 2011 video on efforts to develop a new type of retinal implant to treat blindness was released over the holiday break. If you missed it, as I did, take a moment to watch the fascinating talk by Cornell’s Sheila Nirenberg, PhD. As Nirenberg explains, she and colleagues have developed a prosthetic eye that circumvents damaged circuitry of the retina by hooking into the optic nerve and sending signals from a camera directly to the brain.

It should be noted that the approach has only been tested on animal models at this stage. Nonetheless, the work is exciting and holds the potential to benefit an estimated 10 million people in the United States, and many others worldwide, who are blind or losing their vision.

Previously: The blind can see
Via ScienceRoll

If you could allow family members, caregivers and outside providers access to your electronic personal health records, including such information as lab results, prescriptions and upcoming appointments, would you? In a recent survey of 18,000 Veterans Affairs patients, 80 percent of participants answered “yes.”

“Patients were overwhelmingly interested in allowing their caregivers and health-care providers to access their online health information and help them manage their health care,” Stanford/VA Palo Alto Health Care System researcher Donna Zulman, MD, recently told my colleague. In a release, she also discussed the likely reasons behind the participants’ “dramatic response:”

She said the veteran patient population tends to have multiple chronic conditions, so “it would be especially beneficial for these complex patients to be able to share their information with the people who are helping them.” Additionally, many veterans live far from family members who might provide support. Almost half of those respondents wishing to share their records with a family member other than a spouse or partner reported the specified family member did not live with them.

Few systems that use personal health records currently allow patients to share access with other people, but there may good reason to rethink this:

An accompanying editorial in the journal cites Zulman’s paper and a related study in the same issue as evidence that supports facilitating patient access to their digital files to improve transparency in health care. “Electronic health records should be used to engage patients, their caregivers, and others in the health-care delivery system,” writes Thomas Feeley, MD, of the University of Texas M.D. Anderson Cancer Center, and Kenneth Shine, MD, of the University of Texas System, in the editorial. “Expanding who uses the records and how they use them promises to facilitate communication, decrease redundant testing and enhance our care delivery in ways we have yet to imagine.”

Zulman’s study appears online today in the Annals of Internal Medicine.