There it sat, its lights blinking, detecting light frequencies from 410nM to 940nM, with slices of 18 individual light frequencies, beaming the information to a nearby mobile app.
This is the first prototype of a wearable sensor and app combination to help patients with the rare disease Erythropoietic protoporphyria (EPP) to start reporting the level of pain they experience, capturing associated light information, area of pain, activities at time of episode and a quality of life Life questionnaire.
The information collected can then be used to further research in the disease and support discussions with payor organizations on access to the available therapy. The device/app combination a visible blinking representation of the combined efforts of volunteers with various skills coming together on a common platform to build using software and hardware technologies to help patients and people get along with their day to day challenges.
An idea brews...
The idea of a health hacking lab initially brewed in a coffee shop in Basel. A meetup of a motley group from the healthcare, pharma and tech fields. In action was the time tested method of random chats over coffee leading to serendipitous ideas, avant-garde culture movements and even revolutions.
The topic of conversations spanned from esoteric approaches to patient centric solutions; frustrations with the current pharma and medtech innovation model to the more hands on individuals showing their self created solutions to help them manage their day to day living with Type 1 Diabetes. Soaking in the conversations, the inspiration grew stronger as bottom up DIY (like in T1D) examples in healthcare were discussed.
Then it crystallized - On one hand there are patients and caregivers who have unaddressed needs as they go about living and getting along with their day to day. These needs are sometimes missed by industry, or gets lost in the innovation/design process or not profitable to address. On the other hand, there are people who have the skills to solve these challenges either individually or in groups.
What if a platform was established that brought together the two sides – the patients/caregivers with their challenges and a set of individuals coming together with multiple skills to do something about these challenges?
What if the platform provided a space that not only offered equipment and physical space, but also a safe and trusted environment to share and learn from each other?
What if the platform provided a social and group construct of like minded individuals who wanted to apply their skills for solving real world problems that helped people?
What if the platform provided a safe and a no hidden agenda space to patients and care givers to share their day to day challenges?
What if the platform was inspired by and followed open source principles?
What if the platform was focused on enabling solutions and solving problems by being a matchmaker without any profit agenda?
Birds of a feather... the coming together
The idea of such a platform with the attributes of a bottom up, open innovation approach to solve day to day patient problems while learning and sharing from each other, struck a chord with a few kindred spirits, who found each other via conversations and networks, coalescing together to form the founding team and formally establishing the Health Hacking Lab association (verein)
And so it started to roll... The underlying similarity of motivations brought the diverse group together, created a spirit of community, and gave shape to the structure and the concept of "Listen - Build - Learn". The first few interactions with the wider ecosystem and potential collaborations were instructive and the we iterated to arrive at a set of core values and our open collaboration model.
Institutional support came from the DayOne initiative of Basel Area.swiss . Together with their support and the Swiss Innovation Park, the health hacking lab has “lab space” and equipment. Support on sensors for one of the projects came from AMS
Making a difference. One person at a time.
The starting projects are a wearable for T1D diabetic children ; helping patients with EPP collect data; and app for managing pediatric incontinence. The experiences of interacting with patients, patient groups and caregivers has been inspiring and instructive. Working in close collaboration with them, taking their feedback and input as we give shape to the solutions has been even more enriching and powerful.
One year later and whats next
We are one year in, a small group volunteers, with in kind support from institutions – making strides. One year ago we were assembling furniture to get the lab setup and now some of our work is in hands of patients being field tested for input and improvements with feedback from clinicians and care givers. Our members have grown from 1 to 10.
The possibilities are endless. We want to connect with patients, patient groups and caregivers. We want to connect with innovators of all ilk. We want to help as many people as possible, one at a time, around the world. All with a spirit of open innovation and volunteering time plus skills to make a difference.
We just want to get on with it and find our way, like water.
To find out more, get in touch.