Susannah Fox, an associate director at the Pew Research Center, led a discussion of participatory research at Stanford Medicine X.

1. Participatory Research
Stanford Medicine X
Master Class
Led by Susannah Fox, Pew Research

2. Agenda
• Introductions
• Application comments and questions
• My own experiences and lessons learned
• A summary of all that the participatory
research community shared with me,
captured by the Storify

3. Many people expressed a desire to understand
the processes, problems, and benefits of
participatory research.
Subgroups:
• How do participatory research techniques dovetail or
contrast with cooperative group clinical trials?
• How can participatory research be applied at an
enterprise level, that is, among companies or
organizations which seek to collaborate?
• How can participatory research methods be used to not
only involve patients in the product design, but keep
them informed of progress along the way?

4. Many people asked for techniques for empowering people
to participate more deeply in collaborative research
projects.
For example:
• What are some ways to elicit an authentic, representative
patient voice to enhance clinical care improvements?
• What are some ways to engage health care practitioners in
the design process of a product or practice?
• How to frame questions and prompts to elicit the most
accurate and unbiased response?
• What factors make people more likely to participate and
contribute?
• How to control for selection bias?
• How to include more diverse populations in research,
particularly those who are chronically ill, underserved, and/or
uninsured?

5. People asked for advice about how to
communicate more effectively to an internal and
external audience about the value of
participatory research.
• How to convince colleagues of the merits of
participatory research?
• Specifically: One group’s current practice relies on
focus group reports – as they say, it’s an incomplete
picture of the patient experience. How can they gain
buy-in for using participatory research methods to help
colleagues see the more complete picture in both
clinical and personal settings, such as live ethnography,
direct double-blind patient discussions, online
observations…?

6. People asked for techniques for working
connection, storytelling, and engagement into
clinical practice.
One person is just plain fired up:
• “It is time to leverage the magic of community and technology
to spark real and lasting behavior change in our clinical
practice. The pump is primed. We are eager and tech-savvy,
HIPAA knowledgeable, and so needing to get our patients
engaged, online, connected to each other and to us.”

7. How can participatory research help to connect
patient communities and research communities,
which are currently disconnected?
Can participatory research methods help to
surface the knowledge that is being shared in
online disease communities so that more people
can learn from it?

8. One person has a specific research question and
wonders if participatory research can help answer
it:
• Current project includes location lifelogging,
which uses a person’s location traces to capture
aspects of their life. From the location traces we
can build an understanding of patterns, routines,
and behaviors, as well as see how these drift over
time. One of the large unanswered questions of
all forms of lifelogging is how it can be valuable to
individual users. Can participatory research
methods aid in answering this question?

9. Another person had a specific cross-cultural
question:
• Can models used in the US apply to the UK?

10. Resources
• Storify:
http://storify.com/SusannahFox/participatory-
research
• Blog posts:
http://susannahfox.com/category/participator
y-research/