Creation of Research Collaborative Innovation Network in Type I Diabetes

Faculty Contact: Joyce M. Lee, MD, MPH

Background:
Patients and caregivers have profound knowledge of the patient experience, understand the obstacles and barriers to chronic disease management, and have creative solutions to address and solve health problems. Their expertise could enhance the design, implementation, and dissemination of research. Type 1 diabetes (T1D) is a disease that provides a unique opportunity for engaging patients in research creation, as it is almost entirely a patient-driven self-managed disease. Most key decisions happen outside of the clinic, T1D patients and caregivers are the “scientists” of their own disease and represent an important source for understanding what types of interventions, technologies, or tools should be studied for improving diabetes outcomes. Furthermore, they are congregating and collaborating in online communities, creating a collective intelligence that could be tapped for future research endeavors. Free open-source code, coupled with accelerated sharing through the Facebook group and social media has created a collaborative community (Nightscout Project) that is primed to share knowledge, insights, and tools to improve the lives of individuals with T1D.

Objectives:

We are collaborating with members of the Nightscout community to learn about diabetes hacking, making, and innovation in the community, uses and applications of mobile technology in diabetes, and the role of social media in health communication and dissemination. We are also very interested in creating opportunities for participatory design, citizen science, and open science diabetes research. Specific aims of this project are to:

  1. Engage with patients with T1D and their caregivers from an online community using a mixed-methods approach and determine what research studies would be most valuable to patients with T1D and their caregivers.
  2. Design a social and technical operating system for a research collaborative innovation network (COIN) of patients with T1D and their caregivers.

Methods:
We will use the principles of human-centered and participatory design to create the overall system design for a research collaborative innovation network. Specifically, we will:

  1. Conduct qualitative analyses of social media;
  2. Conduct ethnographic design interviews of users in the community;
  3. Convene regular virtual meetings with patient partners to synthesize the data and inform the process of research planning; and
  4. Convene virtual and in-person opportunities to engage with a larger group of stakeholders in the community interested in research.

Through this design work, we will create a common vision and purpose, and a social and technical operating system for a research collaborative innovation network that includes the use of cutting-edge technology, engages patients as lead innovators and research partners, and can scale the research through networked technologies and open science principles.

For more information, please contact:
Joyce M. Lee, MD, MPH
Associate Professor
Pediatric Endocrinology and Health Services Research
Child Health Evaluation and Research Unit
University of Michigan
300 NIB, Room 6E14, Campus Box 5456
Ann Arbor, MI 48109-5456
Tel: 734-615-3139 Fax: 734-615-5153
Email: joyclee[at]umich[dot]edu
Website: doctorasdesigner.com