Published on October 10, 2013
Participatory Research Stanford Medicine X Master Class Led by Susannah Fox, Pew Research
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
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?
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?
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…?
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.”
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?
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?
Another person had a specific cross-cultural question: • Can models used in the US apply to the UK?
Resources • Storify: http://storify.com/SusannahFox/participatory- research • Blog posts: http://susannahfox.com/category/participator y-research/
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