Medicine 2.0 2008 Hansen


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Presentation given at Medicine 2.0 Conference in Toronto. The presentation was recorded and will eventually be available in video.

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Medicine 2.0 2008 Hansen

  1. 1. Patient-Driven Content Creation: Effectively Introducing Wiki Repositories to Virtual Support Communities Derek Hansen, Ph.D
  2. 2. Wikis Threaded Conversation Research ?s Methods Findings Background Discussion
  3. 3. Historical Note
  4. 4. Reuse is Most Common Use
  5. 5. Social Media as Infrastructure
  6. 6. Threaded Conversation <ul><li>Email Lists </li></ul><ul><li>Discussion Forums </li></ul><ul><li>Usenet </li></ul><ul><li>Key Features </li></ul><ul><li>Goal: Support communities of practice by enabling group conversations that can be easily overheard </li></ul><ul><li>Basic unit: short, permanent text message authored by a single person </li></ul><ul><li>Organized by: threads </li></ul>
  7. 8. Wikis <ul><li>Wikipedia (a particularly popular wiki) </li></ul><ul><li>Community wiki repositories </li></ul><ul><li>Key Features </li></ul><ul><li>Goal: Support the creation of community-authored content that can be constantly edited by many people </li></ul><ul><li>Basic unit: An article (or single web page) that supports rich formatting of content </li></ul><ul><li>Organized by: articles (hyperlinks and categories) </li></ul><ul><li>Note: Stores every edit and prior version of an article </li></ul>
  8. 10. Synergies
  9. 11.
  10. 14. Research Questions <ul><li>What new opportunities do wiki repositories offer online health groups? </li></ul><ul><li>What challenges are there to adopting and using a wiki repository and what strategies help overcome those challenges? </li></ul>
  11. 15. Methods <ul><li>Action research approach </li></ul><ul><ul><li>Emailed invitations to existing communities </li></ul></ul><ul><ul><li>Worked with 3 communities to roll out wikis </li></ul></ul><ul><li>Data </li></ul><ul><ul><li>Server logs </li></ul></ul><ul><ul><li>Wiki history </li></ul></ul><ul><ul><li>Email list / Forum messages </li></ul></ul><ul><ul><li>Interviews </li></ul></ul><ul><ul><li>Ongoing communication with communities </li></ul></ul>
  12. 16. Perceived Barriers to Adoption <ul><li>Too much extra work </li></ul><ul><li>Privacy concerns </li></ul><ul><li>Long-term sustainability & data control </li></ul><ul><li>Technological ability </li></ul><ul><li>Quality control </li></ul><ul><li>Liability </li></ul>Based on feedback from communities invited to participate
  13. 17. Perceived Benefits of Adoption <ul><li>Broadening of community’s reach (interface to outside world) </li></ul><ul><li>Enabler of new activities </li></ul><ul><li>Helpful for newcomers </li></ul>Based on feedback from communities invited to participate
  14. 18. Link to Outside World: GIST Cancer Wiki Stats Site Visits Over Time
  15. 19. Technical Challenges <ul><li>Challenge: Learning Wiki markup </li></ul><ul><ul><li>Not as hard as originally expected </li></ul></ul><ul><ul><li>Affects widespread participation, but not prohibited for highly motivated few </li></ul></ul><ul><li>Solutions: </li></ul><ul><ul><li>Create “Wiki 101” page </li></ul></ul><ul><ul><li>Have people share their successes </li></ul></ul><ul><ul><li>Get people to make at least one edit </li></ul></ul>
  16. 20. Conceptualization Challenges <ul><li>“ Where do I start?” </li></ul><ul><ul><li>Focus on content that is not currently “out there” or is hard to find </li></ul></ul><ul><ul><li>Seed wiki with content </li></ul></ul><ul><ul><li>Provide examples (but not too many) </li></ul></ul><ul><li>Wiki as competing with discussion </li></ul><ul><ul><li>Clearly define what activities fit where </li></ul></ul><ul><ul><li>Have Wiki Team recommend topics get moved to or from wiki to discussion </li></ul></ul><ul><li>False concern that wiki is failing because it is not as “lively” as the conversation </li></ul><ul><ul><li>Show website statistics to make secondary use more apparent </li></ul></ul>
  17. 21. Need for Patience 0.7 247 120 Pain 1.5 1,018 120 Graves 2.7 1,235 169 GSI 5.9 1,067 256 css-d New Pages Per Week (avg) New Bytes Per Day (avg) Days in Corpus Community
  18. 22. Informational Challenges <ul><li>Organizing content (page scope and relationship to other pages) </li></ul><ul><ul><li>Have Wiki Team with ultimate responsibility </li></ul></ul><ul><ul><li>Coordinate effort (on email list) </li></ul></ul><ul><li>Overcoming the “copy-paste” mentality </li></ul><ul><ul><li>Summary of the discussion, not a “best of” </li></ul></ul><ul><ul><li>Privacy considerations </li></ul></ul>
  19. 23. Social Challenges <ul><li>Motivating widespread participation </li></ul><ul><ul><li>Have Wiki Team, not individual </li></ul></ul><ul><ul><li>Advocate on email list by pointing to wiki (“for more info see…”, “you should add that to…”) </li></ul></ul><ul><li>Concern about editing others’ content </li></ul><ul><ul><li>Consciously decide what should be “signed” and what shouldn’t be </li></ul></ul><ul><ul><li>Patient experiences hard to summarize </li></ul></ul>
  20. 24. Conclusions <ul><li>Technical challenges far outweighed by social, informational, and conceptual challenges </li></ul><ul><li>Communities may benefit from a collection of infrastructures with different capabilities </li></ul><ul><li>Need for more studies of social practices around technology </li></ul>
  21. 25. Thanks to… <ul><li>Collaborators </li></ul><ul><ul><li>Sean Munson (University of Michigan) </li></ul></ul><ul><ul><li>Paul Resnick (University of Michigan) </li></ul></ul><ul><li>Online communities I’ve worked with </li></ul><ul><ul><li>GIST support, grave’s disease, and chronic pain support groups </li></ul></ul>
  22. 26. Credits
  23. 27. Derek L. Hansen Assistant Professor [email_address]
  24. 28. Pages of Interest <ul><li>Clinical trials </li></ul><ul><li>Understanding lab reports </li></ul><ul><li>Way to find others (e.g., familial GIST) </li></ul><ul><li>Coping with surgery </li></ul><ul><li>Drug Side Effects </li></ul><ul><li>Specialized, highly technical pages </li></ul>