We believe it is an opportune time to tap into the capabilities and drive of the Nightscout community and the larger diabetes community to create a shared vision for patient-centered research. The #NightscoutStudy Reseach Collaborative Innovation Network (COIN) is intended to create a collaborative innovation network for diabetes research that supports collaboration and co-design by patients, caregivers, and researchers. With this COIN, we seek to:
- Promote the participation of patients and caregivers throughout the research life cycle (research study ideation, design, conduct, and dissemination)
- Facilitate collaborative interactions between individuals with type 1 diabetes and caregivers, clinicians, and researchers
- Utilize the tools of mobile technology and social media in the conduct of research
- Accelerate the research life cycle
- Promote the principles of open science
Why We Are Doing This
Patients and caregivers have profound knowledge of the patient experience, understand the obstacles and barriers to chronic disease management, and often have creative solutions to address and solve health problems. Their expertise and wisdom could enhance the design, implementation, and dissemination of research, however, the current biomedical research paradigm has traditionally treated patients and caregivers as objects of research, rather than partners in research.
Type 1 diabetes (T1D) is a disease that provides a unique opportunity for engaging patients and caregivers in the creation of research, as it is an almost entirely patient-driven, self-managed disease. Most key decisions for T1D management happen outside of the clinic and away from the doctor in the home, school, or work. Individuals are "citizen scientists," continually running experiments and concocting solutions to determine the best course of action for their disease on a day-to-day basis. When is the best time to take an insulin bolus before a meal? How should I adjust my insulin or carbohydrate intake if I am doing exercise or sports? When should I change the infusion site for my insulin pump? As scientists of their disease, patients with T1D and their caregivers represent an important and authoritative source for understanding what types of interventions, technologies, or tools should be studied for improving outcomes in diabetes.
What is Nightscout?
The Nightscout Project is a do-it-yourself mobile technology system for diabetes that was created by a global online community of patients and caregivers who are now connected by a Facebook group called "CGM in the Cloud." Learn more about Nightscout and CGM and the Cloud:
- Visit the Nightscout website: www.nightscout.info
- Read more about the evolution of the project in the Wall Street Journal, Citizen Hackers Concoct Upgrades for Medical Devices, and the New York Times, A Do-It-Yourself Revolution in Diabetes Care
- For a more detailed history of how it came about, read this blog post by Kerri Sparling: We Are Not Waiting: CGM in the Cloud (Part 1)
- Learn more about the mission of the Nightscout Foundation
- Read our Viewpoint about Nightscout in JAMA: A Patient-Centered Do-It-Yourself Mobile Technology System for Diabetes: Promises and Challenges for a New Era in Medicine (free access if you register for the JAMA Reader app!)
Who We Are
Nancy Benovich Gilby*
*Members of the Technical Advisory Subcommittee.