This document discusses participatory design in healthcare. It describes how the author collaborated with patients to design educational videos about food allergies after her son was diagnosed. This led to the videos being shared widely online and her son gaining confidence as an expert. The author advocates for participatory design and positioning patients as experts, makers, and collaborators. She founded HealthDesignBy.Us to bring together patients, designers, and healthcare providers to collaboratively design solutions.

1. Participatory Design
and the Making of
Health
Joyce Lee, MD, MPH
Doctor as Designer
Twitter: @joyclee

2. My academic
Identity:
Associate Professor
School of Medicine/
Public Health

3. My Alternative
Online Identity

4. I tweet and blog about the
intersection of health, technology,
and participatory design
http://goo.gl/jQdUxR

5. Disclosure: I have no formal
training in design

6. Design was something I
stumbled upon through a
personal design experiment

7. B and S have life-threatening
food allergies

8. The teachers need vital
information about how
and when to give the epi-pen

9. But this is a
#design #fail

10. So we were inspired to
make a Youtube video!

11. By “we” I mean the
collective “we” since I am a
#lazytigermother

12. Go to the 1st video on
Ihavefoodallergies.tumblr.com!

13. I posted it online
http://goo.gl/M9XZwS

14. His teacher shared
it with the whole school

15. It went a little bit viral
http://goo.gl/v3lE18

18. 1479 views!
#designsuccess
#proudtigermother

19. B has his own blog now
http://ihavefoodallergies.tumblr.com

20. Check out video 2 of
the trilogy on the blog!

21. Check out video 3 of
the trilogy on the blog!
http://goo.gl/M9XZwS

22. I also made a low-!delity
version for the teachers

23. With his illustrations

24. And additional information
about “tricky” allergens

25. My Design
Insights
about the Production of
Health and the Future
of Healthcare

26. We were
experts

27. We were
makers

28. We were
collaborators

29. Patient as
expert
maker
collaborator
#futureofhealthcare

30. But to reach the
#futureofhealthcare
we need to overcome the
#cultureofhealthcare

31. Expert
“D!"#$r%&'(e)
e*+,(t%-./
n!0.1a23,4t%
Editorial hashtag:
#whereareallthewomen

32. Maker
“O567/c89#:f;<=/h8>?@h)
pABCDs%3E4aFG.Hh!I?J
b8&K(eL0M4g)N,Ol2N”

33. Collaborator
“H!"#$h i%
c&'($e) d*+,-r
T. p/012n3”

35. I started collaborating with
Matt Kenyon & John Marshall

36. Applying Design Thinking
to Healthcare

37. Recognizing the wisdom
and expertise of the patient

38. Allowing the patient voice to
drive the identi!cation and
prioritization of problems

39. Working with patients as
co-designers in the creation
of solutions for health

40. Pairing patients with designers
to create tools inspired by the
patient experience
@jakiebones & @TheTrevorTorres
http://goo.gl/3w3lIZ

41. “A” & @robokittycat
http://goo.gl/STfnuX

42. Creating a culture
of design in health
Design = A Distraction
A critical tool
for the creation of health
@showindshe http://goo.gl/xoZxK8

43. Maker Movement
Do It Yourself (DIY)
Learning by Doing
Peer-to-Peer

44. The maker movement, a model for
patient-centered participatory design?
Maker
Movement
Participatory
= Design

45. DIY = Expert
Learning by doing = Maker
Peer-to-Peer = Collaborator

47. We brought together a
community of patients and
health providers

48. Designers, Tinkerers,
and Makers

49. To explore the amazing
things that can be created
by combining making and health

50. We created a collaborative
innovation network called
HealthDesignBy.Us
to further this work
Join us!
goo.gl/mEmaiO

51. #currentstateofhealthcare
Doctor to Patient
Passive
Solitary

52. #mydreamforhealthcare
Patient to Patient
Active
Collaborative

53. B is thinking about
making more prototypes

54. B extended his allergy work
at the We #makehealth Fest
http://goo.gl/bEY0Tg http://goo.gl/fPTFuF

55. B gave the opening
remarks at the Fest too!
http://goo.gl/bEY0Tg

57. HealthDesignBy.Us
Twitter: @healthbyus
FB: HealthDesignBy.Us
My gratitude to our patient experts, Matt
Kenyon, John Marshall, Patricia Anderson, Nancy
Benovich Gilby, Emily Puckett Rogers, Scott
Olson, Amy Cohn, Patricia Abbott, Kelly Parent,
John Costik, Jose Gomez-Marquez, Emily
Hirschfeld, Ghada Mustapha, Jacob Hendricks,
Margot Robert, Xiaoying He, Trevor Torres, Nick
Reid, Sam Oliver, Charles Woodson Research
Fund, UM Provost, & the HealthDesignBy.Us
virtual community