5. Grant Support for Design Thinking
• Learning Health Systems for Type 1 Diabetes (T1D
Exchange)
• Patient-centered Data Visualizations for Diabetes
(AHRQ R21)
• Nightscout Project (PCORI)
7. Design will help you ask and answer the right research
questions
Design will improve the user experience of research
Design will lead to greater levels of engagement and
participation by patients in research
@joyclee
Hypotheses
14. “What one person knows, everybody knows…So it’s
travelling at the speed of light.”
Open Source Code
15. @joyclee
“A cyberteam of self-motivated people with a collective vision, enabled
by the Web to collaborate in achieving a common goal by sharing
ideas, information, and work”
-Peter Gloor in Swarm Creativity
Collaborative Innovation Network
Leadership Development Team Support “Makers”
17. To promote the participation of patients and caregivers
throughout the research life cycle (ideation to dissemination)
To utilize the tools of mobile technology and social media for
conducting research
To accelerate the research lifecycle in Type 1 Diabetes
@joyclee
PCORI Eugene Washington PCORI Engagement Award (1442-UMich).
18. Design Ethnography
Secondary Analysis of Facebook Group Conversations
Participatory Design with Patient Partners
Active in the strategic design and execution of a
research collaborative
Community Engagement through Design Workshops
Use of Design in Research
@joyclee
23. Nightscout Study Design and Governance
Use of Open Humans Platform
Nightscout Foundation Data Commons
Community-Driven Communications
@joyclee
24. OpenHumans.org
“Projects” or “IRB-covered Research Projects”
Participants decide with whom to share their data
Deidentified data, but capacity for messaging participants
@joyclee
25. Nightscout Study Design and Governance
Use of Open Humans Platform
Nightscout Foundation Data Commons
Community-Driven Communications
@joyclee
26. Nightscout Foundation Data Commons
Data is “owned” by the community
Academic Researchers are a beneficiary of data donation
@joyclee
27. Nightscout Study Design and Governance
Use of Open Humans Platform
Nightscout Foundation Data Commons
Community-Driven Communications
@joyclee
29. Design will help you ask and answer the right research
questions
Design will improve the user experience of research
Design will lead to greater levels of engagement and
participation by patients in research
@joyclee
Hypotheses
30. Emily Hirschfeld, Ashley Garrity, Sarah Clark, Mark
Newman, Nancy Benovich Gilby, Jacob Dwyer, CGM in
the Cloud Community
Eugene Washington PCORI Engagement Award (1442-UMich)
Email: joyclee@med.umich.edu
Twitter: @joyclee
http://www.doctorasdesigner.com
It Takes a Virtual Village
John Costik, Dana Lewis, Weston Nordgren, James
Wedding, Ben West
@joyclee
32. Takeaways
Design is learned by doing and learning from a
diverse set of colleagues
Participatory design that engages
patients/caregivers as partners is critical for
designing research that matters
Use strategic grantsmanship to support your
design work
@joyclee