Participatory Research

I taught a class about participatory research at Stanford Medicine X in Sept 2013 (and an encore on Feb 6, 2014). This is a collection of ideas, resources, and readings to inspire, inform, and incite.

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  1. Tom Ferguson, MD, introduced me to the concept of participatory research when he sent me a copy of Diana Forsythe's classic article, "New Bottles, Old Wine: Hidden Cultural Assumptions in a Computerized Explanation System for Migraine Sufferers" (1996):
  2. My Pew Research colleagues and I have attempted to incorporate the concept of "listen more than ask" into our research, using social tools and qualitative methods to improve our surveys of the American public. We made mistakes along the way, which I'll share, such as not identifying the true leaders of an online patient community and therefore garnering a very low response rate when we surveyed that population. One lesson on the positive side: Include as many open-ended questions as possible, such as one that simply asks, "Is there anything else you'd like to share?" (It never fails to garner the richest, most important insights.)
  3. Traitwise: Surveys That Engage (seriously, that's their tag line and I believe it). People taking Traitwise surveys can skip questions, vote them down if they are poorly constructed, and even suggest their own questions. I'm always on the look-out for participatory methods and Traitwise is at the top of my list:
  4. 200,000 people took the Pew Research Center's News IQ Quiz within the first 4 days of its launch. And yet response rates to our telephone surveys are down to 9%. Maybe people will answer questions if they get to see how they match up with others, immediately, and in that small way, participate in the research.
  5. I'm a student of participatory research, so have collected resources from people who have mentored or inspired me. Please don't feel you need to read every article or watch every video. This is a smorgasbord. Make a plate of what interests you.
  6. I added this article in January 2014 -- an engaging read about a company that takes participatory research very seriously:
  7. Alex Bornkessel created an excellent overview of participatory research methods:
  8. Yanique Redwood of the Consumer Health Foundation introduced me to the concept of "participatory photography":
  9. Click through to see photos documenting life for people managing tuberculosis and HIV in Tanzania:
  10. Here is an article about PhotoVoice:
  11. And below is an article about the "potential for invasion of privacy and how that may be prevented; issues in recruitment, representation, participation, and advocacy; and specific methodological techniques that should be used to minimize participants' risks and to maximize benefits."
  12. Manny Hernandez of the Diabetes Hands Foundation sent me this journal article (sadly behind a paywall, but maybe some of you have access):
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