Patient Experts, the Maker Movement, and Online Communities
Cultural Shifts in Healthcare
This week the Journal of the American Medical Association published our commentary about the Nightscout Project, a Do It Yourself Mobile Technology System that was developed by patients and caregivers living with type 1 diabetes. In the commentary we discuss the origins of the project, its importance for healthcare, and challenges that the community has faced since its inception.
The Origins of Nightscout
As we wrote:
The origins of the Nightscout Project began in February 2013 when the parents of a 4-year-old boy with newly diagnosed type 1 diabetes began using a continuous glucose monitoring system (CGMS) approved by the US Food and Drug Administration (FDA) that would provide interstitial glucose readings every 5 minutes. The information was invaluable to the family, but the patient’s parents could not monitor the child’s blood glucose levels while he was at school because there were no commercially available mobile technology solutions to access the data in real time. The father (who is a software programmer) began developing a computer code that would enable him to access the blood glucose readings from the CGMS receiver to the computing cloud through a smartphone. With the data in the cloud, the blood glucose levels could be viewed by the parents from anywhere to provide a continuous monitoring solution.
When the father successfully transmitted his son’s blood glucose data to the cloud, he sent a tweet of his achievement through the social media platform Twitter that was noticed by other caregivers and patients with type 1 diabetes.
Those who had technical programming expertise reached out to the father. He shared the computer code with these individuals, and as a group they began using, adapting, and creating new code to generate novel and personalized mobile technology solutions, including displays of glucose values that served as care portals to allow caregivers to input additional data (insulin doses, carbohydrates), smartphone applications with alerts for high or low levels of blood glucose, and real-time views of blood glucose levels on wearable computing devices like programmable wristwatches.
The group decided to make the computer code open source, which included the smartphone application for transferring data from the CGMS to the cloud, the web application to display values stored by the CGMS, and the watch face for a wearable device that displays the values open source. The group created a website that hosted the code and do-it-yourself written instructions and informational videos for setting up the system.
The group also opened a private Facebook group called CGM in the Cloud that became a community forum where members could learn more about the system and ask for and receive technological advice and troubleshooting.
Although the majority of support occurs virtually through online interactions, individuals can also connect through the Facebook group to set up local in-person install sessions to provide and receive system support. At its inception, the Facebook group had approximately 40 members but rapidly increased to more than 15 000 members in the United States within 18 months, and has expanded to include more than 4000 members in a number of other countries.
As of mid-April 2016, there are 17,181 members.
Why is the Nightscout Project so Important for Healthcare?
There are 3 important innovations that Nightscout has brought to the forefront inside the healthcare ecosystem, which I have outlined before in my TEDx talk:
Patient as Expert: Patients and caregivers are now empowered to design their own health solutions; they don’t have to wait for healthcare providers or the industry to do it for them.
Patient as Maker: The creation or “making” of tools for health is becoming democratized, due to the availability of open source code, mobile/wearable applications, and cloud-based computing.
Patient as Collaborator: Patients and caregivers are participating in a new form of large-scale health production created through human cooperation and collaboration, facilitated by social media.
What are the Challenges with the Nightscout Project and This New Form of Healthcare Production?
In our commentary, we discuss a variety of challenges, including safety issues, legal liability issues, regulatory issues, and possible disparities in healthcare access to CGM and mobile technology, but perhaps one of the biggest challenges lies at the intersection of technology and culture.
Susannah Fox, Chief Technology Officer at the U.S. Dept. of Health & Human Services, recently spoke at the HxR Conference about this issue:
“We’re living through this time right now where technology is a Trojan Horse for change. We say technology, but we mean innovation. We say interoperability and open data, but we mean culture change.”
Nightscout technology has led to a cultural change inside the healthcare ecosystem. It has flipped the model of health production from a top down, provider and industry driven system, to a bottom-up, patient-driven system.
As we wrote in the commentary:
The Nightscout Project has fundamentally changed current definitions of health production and “patient engagement.” Some critics may raise questions about the project such as:
-Should patients even be doing this type of activity?
-Is distributing the code dangerous?
-Should the code be regulated by the FDA?
-Should the FDA shut down the Facebook group?
However, a different set of questions may be more relevant such as:
-How might the current healthcare delivery system integrate patients and caregivers more fully into the design of health systems, tools, and technologies?
-How might open source coding and large-scale collaborative communities be used for solving problems in health?
-How might healthcare stakeholders leverage technologies like social media to scale the communication and dissemination of innovations in health?
Healthcare stakeholders, it is time to embrace not only new technologies (mobile technology and social media) but a new participatory culture, which welcomes patients as partners for achieving innovation and transformation inside the healthcare ecosystem.
Special thanks to collaborators and patient/caregiver partners: John Costik, Nancy Benovich Gilby, Dana Lewis, Weston Nordgren, James Wedding, and Ben West.
To view the commentary in JAMA click on this link:
You can get free access if you register for the JAMA reader app.
Learn more about our activities to create a collaborative approach to patient-driven research by signing up for our MAILING LIST!
With a PCORI grant we are engaging with the Nightscout Foundation and patient and caregiver partners from the T1D community. If you are an individual with T1D or a caregiver of a loved one with T1D interested in participatory research, please join us for a design workshop focused on T1D research at the Children with Diabetes Friends for Life Conference in July 2016. Learn more about the workshop HERE.
I tweet and blog about health, technology, and participatory design as “Doctor as Designer”. Sign up for my Tinyletter here!
Nightcout video highlights:
John Costik: We #MakeHealth Fest 2014 Keynote
James Wedding: We #MakeHealth Fest 2015 Nightscout Symposium Presentation
Ken Stack: We #MakeHealth Fest 2015 Nightscout Symposium Presentation
Weston Nordgren: We #MakeHealth Fest 2015 Nightscout Symposium Presentation
Nate Heintzman: We #MakeHealth Fest 2015 Nightscout Symposium Presentation
Joyce Lee: Nightscout Research 2015 Quantified Self Public Health Symposium