Medicine 2.0 2008 Hansen
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The document discusses the implementation of wiki repositories in virtual support communities, highlighting both potential benefits, such as broadening community reach and aiding newcomers, and challenges including privacy concerns and motivating participation. It emphasizes the importance of action research and community collaboration in overcoming barriers, especially focusing on social, informational, and conceptual challenges rather than just technical ones. The findings suggest that tailored support and dedicated teams can enhance user engagement with wiki platforms in health-related contexts.
![Derek L. Hansen Assistant Professor [email_address]](https://image.slidesharecdn.com/4cr21530hansen-122611504452-phpapp02/85/Medicine-2-0-2008-Hansen-27-320.jpg)
Medicine 2.0 2008 Hansen
- 1. Patient-Driven Content Creation: Effectively Introducing Wiki Repositories to Virtual Support Communities Derek Hansen, Ph.D
- 2. Wikis Threaded Conversation MedShelf.org Research ?s Methods Findings Background Discussion
- 4. Reuse is Most Common Use
- 5. Social Media as Infrastructure
- 6. Threaded Conversation Email Lists Discussion Forums Usenet Key Features Goal: Support communities of practice by enabling group conversations that can be easily overheard Basic unit: short, permanent text message authored by a single person Organized by: threads
- 8. Wikis Wikipedia (a particularly popular wiki) Community wiki repositories Key Features Goal: Support the creation of community-authored content that can be constantly edited by many people Basic unit: An article (or single web page) that supports rich formatting of content Organized by: articles (hyperlinks and categories) Note: Stores every edit and prior version of an article
- 10. Synergies
- 11. MedShelf.org
- 14. Research Questions What new opportunities do wiki repositories offer online health groups? What challenges are there to adopting and using a wiki repository and what strategies help overcome those challenges?
- 15. Methods Action research approach Emailed invitations to existing communities Worked with 3 communities to roll out wikis Data Server logs Wiki history Email list / Forum messages Interviews Ongoing communication with communities
- 16. Perceived Barriers to Adoption Too much extra work Privacy concerns Long-term sustainability & data control Technological ability Quality control Liability Based on feedback from communities invited to participate
- 17. Perceived Benefits of Adoption Broadening of community’s reach (interface to outside world) Enabler of new activities Helpful for newcomers Based on feedback from communities invited to participate
- 18. Link to Outside World: GIST Cancer Wiki Stats Site Visits Over Time
- 19. Technical Challenges Challenge: Learning Wiki markup Not as hard as originally expected Affects widespread participation, but not prohibited for highly motivated few Solutions: Create “Wiki 101” page Have people share their successes Get people to make at least one edit
- 20. Conceptualization Challenges “ Where do I start?” Focus on content that is not currently “out there” or is hard to find Seed wiki with content Provide examples (but not too many) Wiki as competing with discussion Clearly define what activities fit where Have Wiki Team recommend topics get moved to or from wiki to discussion False concern that wiki is failing because it is not as “lively” as the conversation Show website statistics to make secondary use more apparent
- 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
- 22. Informational Challenges Organizing content (page scope and relationship to other pages) Have Wiki Team with ultimate responsibility Coordinate effort (on email list) Overcoming the “copy-paste” mentality Summary of the discussion, not a “best of” Privacy considerations
- 23. Social Challenges Motivating widespread participation Have Wiki Team, not individual Advocate on email list by pointing to wiki (“for more info see…”, “you should add that to…”) Concern about editing others’ content Consciously decide what should be “signed” and what shouldn’t be Patient experiences hard to summarize
- 24. Conclusions Technical challenges far outweighed by social, informational, and conceptual challenges Communities may benefit from a collection of infrastructures with different capabilities Need for more studies of social practices around technology
- 25. Thanks to… Collaborators Sean Munson (University of Michigan) Paul Resnick (University of Michigan) Online communities I’ve worked with GIST support, grave’s disease, and chronic pain support groups
- 26. Credits http://www.flickr.com/photos/oneeighteen/1690769913/ http://www.flickr.com/photos/zhurnaly/87396143/ http://www.flickr.com/photos/cupcakequeen/2447557364/ http://www.flickr.com/photos/chasing_imperfection/269997777/ http://scobleizer.com/2007/11/02/social-media-starfish/
- 27. Derek L. Hansen Assistant Professor [email_address]
- 28. Pages of Interest Clinical trials Understanding lab reports Way to find others (e.g., familial GIST) Coping with surgery Drug Side Effects Specialized, highly technical pages
Editor's Notes
- #2: Images represent two key characteristics of social media Left: Conversation (in this case between Jim Henson and Kermit) Right: Large-scale (those are 50,000 cupcakes) CASCI stands for Center for the Advanced Study of Communities and Information - a new research center at UMD that I direct - see http://casci.umd.edu