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Asynchronous Remote Communities (ARC) for Researching Distributed Populations

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Presented at Pervasive Health 2016

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Asynchronous Remote Communities (ARC) for Researching Distributed Populations

  1. 1. ASYNCHRONOUSREMOTECOMMUNITIES(ARC) FORRESEARCHINGDISTRIBUTEDPOPULATIONS Haley MacLeod1 Ÿ Ben Jelen1 Ÿ Annu Prabhakar1 Ÿ Lora Oehlberg2 Ÿ Katie Siek1 Ÿ Kay Connelly1 1 School of Informatics and Computing, Indiana University 2 Department of Computer Science, University of Calgary @haley_macleod www.haleymacleod.com
  2. 2. Human Centered Research Methods Interviews Focus Groups Diary Studies Photo Elicitation Design Workshops Role-Playing Card Sorting Collages Guided Tours Observations
  3. 3. Collocated studies are not always possible.
  4. 4. Rare Disease Populations •  <0.05% •  Geographically distributed •  Very active on social media, especially Facebook
  5. 5. One Option: Remote Interviews Instant Messaging (Voida et al. 2004, Dimond et al. 2012) Telephone (Dimond et al. 2012) Video Conference (Hillman et al. 2015) Email (Dimond et al. 2012)
  6. 6. We need ways of conducting group based research online.
  7. 7. Asynchronous Remote Communities (The ARC Method)
  8. 8. Today’s Talk: •  What we did •  What we learned
  9. 9. Today’s Talk: •  What we did •  What we learned
  10. 10. Recruitment
  11. 11. Recruitment Consent
  12. 12. Recruitment Consent Participants
  13. 13. Procedure •  Private Facebook group
  14. 14. Procedure •  Private Facebook group •  5 day introduction period
  15. 15. Procedure •  Private Facebook group •  5 day introduction period •  22 weeks
  16. 16. Procedure •  Private Facebook group •  5 day introduction period •  22 weeks •  11 activities
  17. 17. For 24 hours, I’d like you to keep track of interactions you have with other people about your disease. Make a note of: •  Who you talked to (could be people on Facebook, your friends or family, medical providers, etc.), •  How your talked to them (online, on the phone, in person, etc.) •  A brief description of what you talked about and how you felt about it. DiaryStudy
  18. 18. ok, i am not able to even get up and get my act together to do this activity, following surgery, but I can explain mine…
  19. 19. Post Study •  Group continues to exist •  Sharing research updates •  Review drafts of papers
  20. 20. Analysis (of Method) •  Facebook posts, comments, timestamps, likes, “seen by” •  Private Facebook messages and email threads •  Survey responses from Typeform •  Google Voice submissions (photo, text, voicemail)
  21. 21. Analysis (of Method) •  Qualitative analysis •  Visualizations in Tableau •  Social network analysis in Gephi
  22. 22. Analysis (of Method) •  Qualitative analysis •  Conversational flow •  Comments about activities •  Life events influencing participation •  Visualizations in Tableau •  Social network analysis in Gephi
  23. 23. Analysis (of Method) •  Qualitative analysis •  Visualizations in Tableau •  Social network analysis in Gephi
  24. 24. Today’s Talk: •  What we did •  What we learned
  25. 25. Pre-Study Interactions Recruitment •  Recruiting from communities where the researcher was already known to group members •  Recruiting from groups for the first time
  26. 26. Pre-Study Interactions Recruitment We recommend taking the time to build a strong rapport with members of groups used for recruiting before, during, and after the study, following not only best practices for recruiting, but also good practices for maintaining those relationships at the conclusion of the study.
  27. 27. Pre-Study Interactions Informed Consent •  Requiring physical signatures on consent documents may have limited our population by physical and technological ability
  28. 28. Pre-Study Interactions Informed Consent We recommend investigating alternative methods of consenting electronically.
  29. 29. Activities Activity Preferences •  Recall vs. Generative activities •  Generative activities were less successful “I just couldn’t understand what was wanted, despite the examples”
  30. 30. Activities Activity Preferences We recommend having participants post directly to the group, even submissions still in progress. Seeing other participants’ contributions can give inspiration to people who are hesitant to contribute creatively.
  31. 31. Engagement Over Time •  Revisiting posts after they had been posted initially •  Completing multiple activities at once
  32. 32. Engagement Over Time We discourage having activities that build on one another where the sequence is important.
  33. 33. Relationships Between Participants Social vs. Activity Post •  Mixed views on posts not directly related to research “It’s mostly been socializing at this point. I was going to chime in when it got more research-oriented.” “It was good getting to know others in the group. I really liked that most were so open and friendly.”
  34. 34. Relationships Between Participants Social vs. Activity Post We recommend providing opportunities for socialization between participants that are separate from formal study activities. Although this may not appeal to everyone, it can help weed out participants who are not interested in this aspect of the study and would likely become frustrated later if social conversations continue throughout the study.
  35. 35. Researcher Perspective Data Analysis •  Lots of data, lots of work
  36. 36. Researcher Perspective Data Analysis We recommend being mindful of the number of input mechanisms (e.g., Google Voice, email, survey platforms, etc.). Structuring activities to capture data from a range of different sources adds to the richness of the data but means data will be distributed in different locations and need to be collected and organized. Each additional input mechanism introduces additional overhead.
  37. 37. •  Iterating on current approach •  Other study populations •  Other stages of design research Future Work:
  38. 38. Study Materials: tiny.cc/ph2016material
  39. 39. Haley MacLeod hemacleo@indiana.edu Kay Connelly connelly@indiana.edu Katie Siek ksiek@indiana.edu Ben Jelen bcjelen@iu.edu Annu Prabhakar asprabha@indiana.edu Lora Oehlberg lora.oehlberg@iucalgary.ca

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