Cindy has had Chronic Obstructive Pulmonary Disease (COPD) since she was 38. She wakes up every morning suffocating. Not breathing wakes her up. Then it takes her an hour and a half just to get the energy and breath to get out of bed. Once she’s up, her breathlessness saps her strength. Simple tasks become monumental challenges. Every movement is weighed for the energy it will consume. She has less strength and energy available every day so she has to make hard choices. And the equipment she needs just to survive — oxygen concentrator, nebulizer, continuous positive airway pressure (CPAP) machine — are each heavy to carry, require changing masks just to use, and the hoses get caught on just about everything.
And Cindy is not alone. Worldwide there are over 240 million people with the same or worse struggles. For sufferers of COPD, breathing — that simple automatic function most of us take for granted — is a moment by moment struggle. We can live three weeks without food, three days without water, and only three minutes without breathing.
On September 19 and 20, 2015, the MIT Media Lab will host the Breathe: Respiratory Hackathon, with the goal of helping people like Cindy improve their quality of life and sense of wellbeing. We are further expanding the concept of a medical hackathon into a global, ongoing, sustained initiative in a push to continue to develop new ways to help respiratory patients:
This global event will take place in parallel at three sites: at the MIT Media Lab in Cambridge, MA, the Imperial College London Advanced Hackerspace in the UK, and Technion-Israel Institute of Technology in Israel.
At each site, students will work together with patients, medical professionals, designers, and engineers to radically redesign respiration technologies — technologies that could help the millions of people worldwide who suffer from sleep apnea, asthma, Chronic Obstructive Pulmonary Disease (COPD), and similar respiratory issues.
Why a Hackathon?
The idea for this initiative began last June at an event in San Francisco hosted by the COPD Foundation and Novartis Pharma, in which 50+ top thinkers from around the world came together to develop ideas around innovative respiratory technologies. At this event, it became clear that, despite the number of technology solutions on the market, most of them are ‘closed’ and don’t work well together.
Respiration technology — like breast pump technology, the focus of another recent, wildly successful Media Lab hackathon— is one of those things that you don’t think much about until you really need it; and then, when you really need it, you’re too busy or vulnerable to think much about how it might be improved.
We’re bringing together over a hundred energetic, motivated, creative people and giving them the space and resources necessary to focus their talents on creating better respiration technologies and equipment. And then we’re going to support the projects that come out of this process, on an ongoing basis, with a global respiration technology initiative.
Our goal is to improve patient quality of life; improve patient adherence (taking medications, doing breathing exercises correctly, using equipment correctly, etc.); better patient overall health; and increasing patient involvement in their own care.
In essence, the goal is to start moving from a “health care” focus to a “wellness or wellbeing care” focus, and to encourage the community of device manufacturers to further look at device design and function from the patient’s point of view.
How light can a CPAP machine be? How much can we integrate functions that make more sense together? How can we reduce or eliminate the hoses that are constantly getting tangled or wrapped around patients while they sleep? What of challenges of life with COPD can be mitigated with technology? Can mask comfort be increased with better materials or design?
Similar questions can be asked for patients with sleep apnea, asthma, and other respiratory conditions.
Like any good hackathon, the goal of the Breathe: Respiratory Hackathons is to radically rethink the device design, the user experience, and the recording, reporting, and analysis of data. To ask, “What if?”
Respiratory Health is a Growing Problem
Over 240 million people worldwide suffer from the devastating effects of Chronic Obstructive Pulmonary Disease (COPD), and millions more are affected by other or additional respiratory difficulties. The challenges for patients can be daunting: panic associated with not being able to breathe; difficulty just getting out of bed; lack of energy; limitations of devices; and social stigma. And limited treatment options and single-purpose devices too often focus on just one piece of wellness treatment, without fully understanding or embracing patients’ full set of needs. Lack of media attention exacerbates these problems.
According to the World Health Organization (WHO), of the top 10 causes of mortality worldwide, four of them are respiratory diseases. Together, respiratory disease accounts for one out of every six deaths.
But the potential to improve lives goes beyond these statistics. One in five adults in the US has mild obstructive sleep apnea (OSA), and one in fifteen adults has a moderate to severe form of the condition. People with more serious forms of sleep apnea have an up to 15-fold increase of being involved in a traffic accident, due to drowsiness. Successfully treating all US drivers suffering from sleep apnea could save close to 1,000 lives every year.
Improvements to respiration technologies and novel solutions could dramatically improve the lives of millions of people.
Current respiration technologies fail to meet patients’ in a variety of ways. The equipment is generally uncomfortable and difficult to use, and the various components of the technologies involved do not work well together. The areas that most need work are:
- device connectivity
- interoperability of various technologies
If you’ve ever attempted to get any sleep using the current devices used to treat sleep apnea, for example, you know that they’re extremely uncomfortable.
Coming up with a device that will actually improve the quality of sleep is a formidable challenge; but some of the stories we’ve heard from patients involve very low-hanging fruit: for example, one of the commonly used devices has a super-bright LED that remains on all night during operation, lighting up the room.
A Global Initiative
The Breathe Hackathon is intended as a kick-off event for an ongoing, global initiative to address these issues in an sustained way: as the technology landscape evolves, this initiative aims to incorporate relevant advances into respiration technologies.
The Media Lab in particular has been host to many hackathons in its history. Typically, these events generate several promising concepts and prototypes, most of which do not continue beyond the bounds of the event. The recent “Make the Breast Pump Not Suck” Hackathon, however, expanded the scope of a hackathon to include support for projects beyond the weekend of the initial event: members from several teams have continued to work together in the months since the hackathon, going on to present at conferences and create startups with products based on the prototypes conceived at the event.
Our goal with this hackathon is to build upon the success of this approach: expanding the initial event to a global scale, and developing specific plans for a series of continued events and programs, going forward.
A Collaborative Effort to Drive Innovation
This initial event will see collaboration and innovation from people from a range of disciplines and backgrounds, including health care professionals, designers, engineers, business leaders, entrepreneurs, marketers, industry experts, and community members or patients suffering from respiratory illness.
The main sponsor for the event is the COPD Foundation, in collaboration with Novartis Pharma. They and other world-class sponsors are helping the event succeed in a variety of ways, such as donating equipment, prizes, sending engineers and other experts (some are flying in from as far away as Australia!) as well as making available to the teams some neat technology, such as a breathing simulator.
To help the teams ideate and provide some breaks from the intensive hacking we are facilitating breakout sessions. Some will be determined during the event, un-conference style, and some are already scheduled, including sessions with Rodney Yee, Linda Stone, Neema Moraveji, Keely Garfield and others.
At hackathons, the sustained high level of creativity and technical innovation takes a toll mentally and physically. With the help of Keely Garfield we have set up restorative stations to help rejuvenate the participants during the day. Keely is an E-RYT 500 Yoga Instructor, Urban Zen Integrative Therapist (UZIT), Reiki Master, Zen Meditation teacher, and hospice caregiver.
We’re very excited about the ideas that have already emerged from the initial discussions around the formation of this initiative, and we anticipate a burst of new ideas to emerge at the three simultaneous events this weekend.
We’re putting significant effort into making sure that the materials and ideas that emerge during the course of the hackathon are collected in online document and software archives, accessible to everyone; we’ll have staff dedicated to facilitating this process for every team, broadcasting and summarizing ideas as they emerge. This is both a way of facilitating collaboration across teams, and also of ensuring continuity of projects beyond the event itself: we’re planning on generating an accessible “index” into the solution ideas presented at the hackathon, so that others can take up those ideas, “fork” them, and improve upon them later.
Additional Incentives Through Prizes
hrough the generous support of the organizations and companies that have come together to sponsor the event, we are offering several prizes:
- First prize: $3,000
- Second prize: $2,000
- Third prize: $1,000
And in addition, teams will compete globally for two more prizes:
- Patients’ Choice Award: $1,500
- European Respiratory Society International Congress 2015 Crowd’s Choice: TBD
On top of all of that, sponsors will be offering additional prizes at the event itself for the most innovative use of sponsor platforms/services such as theIBM Bluemix Cloud platform, and the Spire Breath Tracker.
On top of these prizes, we are offering a special prize to the team that contributes most to the body of knowledge at the event by sharing and collaborating with other teams. Since teamwork and cross-team collaboration are key to promoting continuity and reusability of the knowledge generated at the hackathon, the teams themselves will vote for other teams based on how helpful they were.
We’ve got a stellar panel of judges for the first three prizes; and we’re excited that the format of the hackathon will allow us to solicit feedback online from the global community of patients suffering from respiratory conditions; we’ll be broadcasting the innovations that emerge during the event, allowing patients around the world to vote on the ideas they like best.
If you’re interested in this hackathon and/or respiratory health in general, we welcome your contributions! Register for the hackathon, while there’s still space available!
Registering is also a way of getting on our mailing list, so that you can stay connected to the initiative as it continues forward. The Global Respiration Initiative will host transformative events in the future, building a growing network of researchers, practitioners, and patients who aim to change the world of respiration.
The Media Lab Breathe: Respiratory Hackathon Event Organizers are: Tal Achituv, Don Blair, Kristy Johnson, Oren Lederman, Tomer Weller, Rohan Puri, and Ronit Senior, and advised by Rich Fletcher and Dorothy Thurston.