While Nick Dawson called for a maker culture in healthcare a year ago, the maker culture has already arrived in the diabetes community. The maker culture is defined as “a contemporary culture or subculture representing a technology-based extension of DIY culture” (Wikipedia). There is already and active Maker Nurse community. Do-it-yourself (DIY) orientation has not come naturally to medicine where dependence on guidance from physicians has been the tradition.
I had the privilege of attending the Diabetes Mine Innovation Summit and speaking at the associated D-Data Exchange at Stanford University on November 20-21, 2014 at the invitation of Amy Tenderich, founder of DiabetesMine and a member of the HIMSS Patient and Family Caregiver Advisory Council. The attendees promoted the hashtag and idea that #WeAreNotWaiting. Those living with Type 1 diabetes have daily challenges of managing glucose levels and insulin injections, diet, potential complications and even sleep. It is not surprising then that this group is impatient for improvements in insulin pumps, continuous glucose monitors (CGMs), and apps to manage their condition. One of the keynoters, Scott Hanselman, a lead programmer at Microsoft and a type 1 diabetic, spoke of the (Sad) State of Diabetes Technology in 2014. This impatience has precipitated a maker culture of software/app hackers and device tinkerers. Two examples are an open source, cloud-based data hub and an open source, DIY project that allows real time access to Continuous Glucose Monitoring data.
This concept of a Maker Culture in healthcare is by no means limited to diabetes but they are definitely in forefront. Other e-Patients are finding ways to download their health data, consolidate it and display it in a way that helps them manage their condition. Others find ways to organize their medications and create reminders for themselves. Tracking of symptoms and daily activities is becoming more common whether through wearable devices, apps or spreadsheets. Some, like quantified selfers, are the ultimate makers in that they track multiple types of health data for themselves, use multiple tracking devices and share their ideas with others.
In addition to patients becoming makers, they are also becoming product reviewers. Whether about devices, drugs or other interventions, ideas are being shared on a daily basis through online patient communities. Again, in the diabetes community, there is prime example called the Diabetes Mine Test Kitchen. See the video below to hear how it works:
How can HIMSS support the Maker culture in healthcare? In several ways:
- HIMSS Connected Patient Community
- HIMSS Patient Generated Health Data Task Force
- HIMSS Innovation Community
- HIMSS mHealth Summit
Let’s listen and learn from patients.