Presented at Pervasive Health 2016

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. Human Centered
Research Methods
Interviews Focus Groups
Diary Studies
Photo Elicitation
Design Workshops
Role-Playing
Card Sorting
Collages
Guided Tours
Observations

3. Collocated studies are
not always possible.

4. Rare Disease Populations
• <0.05%
• Geographically distributed
• Very active on social media,
especially Facebook

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. We need ways of conducting
group based research online.

7. Asynchronous Remote Communities
(The ARC Method)

8. Today’s Talk:
• What we did
• What we learned

9. Today’s Talk:
• What we did
• What we learned

10. Recruitment

11. Recruitment Consent

12. Recruitment Consent Participants

13. Procedure
• Private Facebook group

14. Procedure
• Private Facebook group
• 5 day introduction period

15. Procedure
• Private Facebook group
• 5 day introduction period
• 22 weeks

16. Procedure
• Private Facebook group
• 5 day introduction period
• 22 weeks
• 11 activities

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

19. 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…

21. Post Study
• Group continues to exist
• Sharing research updates
• Review drafts of papers

22. 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)

23. Analysis (of Method)
• Qualitative analysis
• Visualizations in Tableau
• Social network analysis in Gephi

24. Analysis (of Method)
• Qualitative analysis
• Conversational flow
• Comments about activities
• Life events influencing participation
• Visualizations in Tableau
• Social network analysis in Gephi

25. Analysis (of Method)
• Qualitative analysis
• Visualizations in Tableau
• Social network analysis in Gephi

26. Today’s Talk:
• What we did
• What we learned

27. Pre-Study Interactions
Recruitment
• Recruiting from communities where the
researcher was already known to group members
• Recruiting from groups for the first time

28. 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.

29. Pre-Study Interactions
Informed Consent
• Requiring physical signatures on consent
documents may have limited our population by
physical and technological ability

30. Pre-Study Interactions
Informed Consent
We recommend investigating alternative methods of
consenting electronically.

31. Activities
Activity Preferences
• Recall vs. Generative activities
• Generative activities were less successful
“I just couldn’t understand what was wanted,
despite the examples”

32. 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.

33. Engagement
Over Time
• Revisiting posts after they had been posted
initially
• Completing multiple activities at once

34. Engagement
Over Time
We discourage having activities that build on one
another where the sequence is important.

35. 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.”

36. 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.

37. Researcher Perspective
Data Analysis
• Lots of data, lots of work

38. 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.

39. • Iterating on current approach
• Other study populations
• Other stages of design research
Future Work:

40. Study Materials:
tiny.cc/ph2016material

41. 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