From The Editor | April 24, 2013

The Biggest "Big Ideas" At TEDMED 2013

ken congdon

By Ken Congdon

By Ken Congdon, Editor In Chief, ken.congdon@jamesonpublishing.com
Follow Me On Twitter @KenOnHIT

I had the pleasure of attending the TEDMED conference last week in Washington DC. I never experienced the event before, but I heard a lot about it. Everyone told me that TEDMED would be unlike any other conference I’ve ever attended. And it was.

One of the primary goals of TEDMED is to bring the brightest minds in healthcare together and expand the boundaries of their thinking around key challenges facing healthcare. The hope is that through this collaboration, unique new solutions to these challenges can be identified. For this reason, TEDMED, more than any other conference, focuses on content.

Unlike other conferences where you can look at an agenda and pick and choose the educational sessions you wish to attend based on how the abstracts align with your interests, TEDMED wraps a sense of mystery around its sessions and presenters. You never know exactly what you’re going to hear and learn at these sessions. Moreover, you never know what you are going to miss if you decide to opt out of a particular session. This encourages delegates (this is how TEDMED refers to its attendees) to take in all the entire 20+ hours of content the event has to offer. For those of you that remember life before iTunes, I liken the experience to listening to and appreciating an entire album by a musical artist as opposed to just a single song.

TEDMED presenters are also unique. The event is a mixture of science, entrepreneurship, and performance art. Where else will a genome scientist share the stage with a tap dancing duo in the same two-hour educational session? For this reason, all of the presenters had some appeal to me. There were several inspirational figures such as Charity Tillemann-Dick, an opera singer who survived two double lung transplants, and Sue Austin, an underwater wheelchair performance artist, whose stories awed the 2,000 delegates in attendance at the Kennedy Center and the more than 200,000 folks watching a live stream of the event over the Internet.

However, at the end of the event, there were a few key concepts and ideas that resonated more with me than all the others. Some of these concepts were memorable because they focused squarely on my keen interest in health IT, but others quite simply blew my mind. The following are my top takeaways from TEDMED 2013:

Big Data Gets Real — Big data was such a hot topic at TEDMED 2013 it had an entire session dedicated to it (Session 2: How Can Big Data Become Real Wisdom?). However, the influence and promise of big data was palpable throughout the conference.

For example, Danny Hillis, an inventor, scientist, author, engineer, and supercomputer expert, discussed how he was leveraging supercomputers to measure and analyze protein levels in cancerous and healthy bodies. His contention was that everybody is fighting off illnesses and cancers and that the body is mostly successful in this fight. To Hillis, illness occurs when the body fails at something it normally does successfully. By using supercomputers and big data to visualize the constant struggle that goes on inside the human body (via these protein levels), he believes physicians can pre-emptively catch illnesses like cancer before they manifest themselves, ushering in a new “Golden Age” of medicine.

Similarly, Larry Smarr, a physicist and computing expert, explained how he was using big data to manage and control his own chronic colon condition. Through big data, Smarr was able to identify the distinct microbiome and bacteria patterns in healthy colons as opposed to colons with conditions such as ulcerative colitis and Crohn’s disease. By knowing exactly what his bacteria levels were, treating his condition with a specific mix of antibiotics and steroids, and measuring these bacteria levels again, Smarr was able to make noticeable improvements in his own condition. Smarr refers to this movement as “The Quantified Self.”

The Idea Of Health Data Donation—While Hillis and Smarr wowed me with the progress they were making in using big data to better understand and treat cancer and chronic disease, it became clear in their presentations (and others) that the data often needed to make these types of breakthroughs is currently extremely difficult to come by. Enter Amy Abernethy, MD, an oncologist and director at Duke Center for Learning Health Care. Abernethy’s presentation centered around one of her former skin cancer patients who wanted the doctor to keep a portion of her tumor for genetic research in the event any of her family members presented with a similar condition. This gesture led to a revolutionary idea — why aren’t patients asked to donate the health data related to their illnesses for the good of mankind the same way they are asked to donate their blood, organs, or bodies to science?      

Susan Desmond-Hellmann, MD, the chancellor of the University of California, took this concept a step further later in the conference when she suggested that patients need to be the ones that drive the data donation effort. However, Desmond-Hellmann did provide some steps providers and the healthcare industry could take to encourage the act of health data donation. First, a data donation environment has to be enabled by providers and the industry at large — meaning the systems need to be put in place to solicit and collect these types of donations. Second, the act of health data donation should be incentivized — not merely by the idea of potentially helping someone several years in the future, but through an immediate return such as reduced copays, insurance rates, etc.

Need To Collect Digital Breadcrumbs — The term “big data” definitely dominated several conversations, but Deborah Estrin, the professor of computer science at Cornell Tech NYC and the co-founder of openmhealth.org, implored the TEDMED audience not to overlook the small data all human beings create through their daily digital activity. Estrin argued that the data generated through our daily use of digital devices and applications (e.g. smartphones, FitBits, email, Facebook, etc.) can tell you a lot about the health of an individual by tracking our typical digital habits. Estrin refers to this data as “digital breadcrumbs” or our “digital social pulse.” Estrin shared the story of her father’s final days and argued that if health providers or loved ones had insight into his changing digital patterns, they could have been clued into the fact that something was wrong. For example, Estrin’s father stopped responding to email and shopping at his local grocery store in the weeks before his death. Likewise, his daily walks became shorter. One rarely shares this sort of data with a physician during an office visit, but it could be an indication of declining health.

Creating A Patient-Centered Clinical Language —Sally Okun, an RN and VP of advocacy, policy, and patient safety for PatientsLikeMe, argued that there was currently a disconnect between how patients describe their symptoms and the clinical terms used to refer to different illnesses. Okun believes that the correct diagnosis can almost always be found in the patient story. Providers just need to listen to their patients and accurately translate this information into clinical vocabulary. To Okun, the industry needs to humanize the language of health. For example, a patient might use terms like “chipmunk cheeks” or “wobbly walk” to describe their symptoms. PatientsLikeMe has created a systematic curation process to map the patient vocabulary to clinical vocabulary. By creating a lexicon that aligns these different terms (or combinations of these different terms) with different illnesses, providers can have a powerful new decision support tool at their disposal.

Bringing Entrepreneurship To Medicine Jonathan Bush, CEO of athenahealth, challenged conventional wisdom at TEDMED when he asked why entrepreneurial competition can create a Starbucks-style culture and language around coffee, but nothing similar exists in healthcare. To Bush, the healthcare system’s biggest problem is that the “profit motive is trapped in a weak marketplace” where there is little transparency or competition. Bush promoted the idea of limited government intervention and more competitors in a marketplace that he believes is currently producing costly and mediocre care. Bush advocated a more open healthcare system that included caregivers beyond hospitals and physicians to drive down the cost of care. As the head of a leading health IT vendor, Bush’s stance for open competition is healthcare isn’t surprising, but the points he made during his presentation and the passion with which he delivered his message definitely got the TEDMED audience rethinking the healthcare status quo.

Rethinking Obesity — Conventional wisdom was once again challenged when Dr. Peter Attia, founder and president of the Nutrition Science Initiative, gave what I felt was the most powerful presentation of TEDMED 2013. Dr. Attia shared a personal story of how he was forced to amputate the foot from one of his former diabetic patients. He negatively judged this patient because he believed that the amputation was a result of the patient’s unwillingness to control her weight. Years later, Attia faced his own struggle with weight gain. He put on several pounds even though he exercised regularly and followed conventional nutrition guidelines to a tee. He discovered he was insulin resistant, changed his eating habits, and lost the weight.

This experience caused Attia to question what the healthcare industry thinks it knows about obesity. For example, most believe that obesity is the cause of insulin resistance, but what if the industry has it backwards? What if obesity is not always the result of overeating, but a coping mechanism for something more sinister going on at a cellular level? If conventional wisdom about nutrition and exercise failed Attia, is it possible it is failing several others? Dr. Attia has now dedicated his life to truly understanding and controlling obesity through the Nutrition Science Initiative.

The Smartphone As The New Doctor’s Bag — When I wasn’t on location in the Kennedy Center opera house or viewing a live stream of the presentations on the Internet, I was in The Hive. The Hive was an exhibition and networking space at TEDMED where new healthcare startups could demonstrate their innovations. The coolest thing I experienced while in The Hive was the “smartphone physical.” This futuristic checkup, took less than 10 minutes and was entirely powered by smartphone-based devices and apps (e.g. a smartphone-based otoscope, blood pressure monitor, etc.). The concept was developed by Johns Hopkins medical student and Medgadget editor Shiv Gaglani, in tandem with Nurture by Steelcase. The entire physical included nine quantitative and qualitative measures from body analysis, blood pressure and lung function measurement to carotid artery visualization. It was incredible to witness just how many sophisticated medical measurements can be accurately captured using nothing but a smartphone. Moreover, it was exciting to think how many of these applications could be leveraged by patients/consumers to transmit data to their providers and change the patient/physician interaction paradigm.

My TEDMED experience was definitely a refreshing one. The paragraphs in this article provide just a glimpse of the types of content delivered at the event. I encourage you to gain a deeper understanding of the concepts and speakers outlined in this article online.