The Hive at TEDMED 2013 is designed to be a petri dish for innovation, both the kind that flows from new technologies — a Hubble telescope to examine your eyes, anyone? — and that which emerges from insight and cross-disciplinary collaboration.
“There’s nothing more complex than the brain,” said Husseini Manji, M.D., Global Head of Neuroscience for Johnson & Johnson (J&J), which created a Hive space dedicated to exploring diseases of the brain. Manji shared some of the challenges of treating brain diseases. Alzheimers, for example, is 100 percent incurable and 100 percent fatal. With a rapidly aging population, “this will be catastrophic, unless we can learn how to slow or prevent its progression,” Manji says. On the other end of the age spectrum, Manji calls mental illnesses such as schizophrenia and severe depression “a chronic disease of the young,” because they usually emerge in a person’s early 20’s and stay with them their entire life.
Part of the goal of the space is to raise awareness that mental illnesses are a result of neurochemistry. “Asking someone with severe depression to be more positive and exercise and just feel better is like asking someone with diabetes to make their pancreas work better,” Manji said.
The space showcases a 3D brain model that demonstrates brain activity in the form of electric signals in different parts of the brain, as affected by Alzheimer’s, mood disorders, schizophrenia, and chronic pain. Glove simulators, special glasses and a headset that makes it hard to hear help give participants a window into a patient’s experience of dementia.
J&J’s space also features early research on treating age-related macular degeneration, a disease that is currently incurable. Macular degeneration is the leading cause of blindness in adults age 50 and older in the developed world. New retinal imaging techniques draw on technology used in the Hubble Telescope, and could allow physicians to view the eye in such minute detail that they can see individual cells in the back of the eye. That technology, coupled with new non-invasive delivery techniques to deposit stem cells where they can replace previously damaged cells, have been tested on about 30 patients so far, and some 30 and 40 percent of these patients exhibited significant vision improvements that lasted for more than a year, in an early clinical trial.
Not that we can let our guards down. Chrispin Kambili, Global Medical Affairs Leader for Infectious Diseases at Janssen (a subsidiary of J&J), shared the history of tuberculosis (TB), which was nearly eradicated in the U.S. by the 1960’s. In the next decade, the United States was so optimistic about the decline in rates that it was decided to stop funding TB control programs. But then TB came back in a big way in the 1980s. “The AIDs epidemic, migration patterns, antibiotic resistance and the dismantling of the public health infrastructure” meant the country (and New York City in particular) was unable to deal with resurgence, which peaked in 1992, Kambili says. Since then, the rates in the United States have been reduced back down to levels where citizens will likely never know someone affected by TB again.
But the same cannot be said of developing countries. “Every 20 seconds someone dies of TB, though it’s a very treatable and in fact preventable disease,” said Kambili. “But what’s lacking is access to care, which has been difficult to implement on a global scale.” Another challenge is multi-drug resistance, which happens over time when patients aren’t treated in sufficient doses and bacteria evolves to resist common treatments. It’s a challenge, though, to get patients to get sufficient doses when they have to take medication for 18-24 months, and side effects include nausea, vomiting and even deafness. Janssen has developed a new drug, bedaquiline or SirturoTM, that studies show killed bacteria more quickly than a control group taking the standard regimen. FDA gave it accelerated approval in December.
Booz Allen Hamilton’s space leverages potential of a different kind — innate knowledge, insight and experience. That’s the motivation behind “design thinking,” an art and a process that attempts to gain deep insights into a person or a group’s unmet needs through an ethnographic approach to discovery. True design thinking involves having a user population keep journals, allowing researchers to observe and analyze everyday tasks and more. TEDMED Delegates will have the chance to be a part of a small-scale version of this process, as the “design thinkers” on site probe visitors with the question: “What does health mean to you?”
The key principals in the design thinking effort include: “Be empathetic. Put yourself in someone else’s shoes,” said Joe Garcia; and “Reframe the problem from a different lens,” said Patricia Kwong, both of Booz Allen. Kwong offers the example of the problem of MRI machines that were terrifying to pediatric patients. To help develop a solution, physicians put on a pair of knee pads, crouched down to kid-height, and looked at the machine from a child’s point of view. Only then did they come up with the idea to transform the hulk of the MRI machine into a significantly more inviting pirate ship.
Interestingly, the themes emerging from the design thinking discussions at TEDMED so far echo several of the 20 Great Challenges of health and medicine, including the role of the patient and managing chronic disease.
Progress achieved in the Great Challenges since last year’s conference catalyzed conversation in the Robert Wood Johnson Foundation (RWJF) space. After eight months of Google Hangouts, a robust online discussion, and carefully curated Storify collations, the entire TEDMED community has the opportunity to weigh in on where we go from here to conquer the 20 Great Challenges.
At the Whole Patient Care station, Challenge team member Blaire Sadler, Senior Fellow at the Institute for Healthcare Improvement, spoke with visitors about how the sub-specialization of medicine has led to each physician treating only an illness or body part, which results in a lack of care coordination and alienated patients. Sadler and his collaborators also wondered about the ideal environment in which a person can heal: “Why does a patient room have to be scary, austere and hospital-like? Why can’t it be home-like, peaceful and include art and music for positive distractions?”
Maybe one of the most interesting things about the RWJF space was the cross-sector dialogue it facilitated. For example, Suzanne Mintz, President/Co-founder at National Family Caregivers Association, stopped by the Causes of Sleep Deprivation station to share her take on why sleep is such a challenge for those who “can’t shut their heads off… when people are on high alert, it’s hard to come down,” noting that caregivers often are high on stress in addition to having additional responsibilities at night to care for a sick loved one.