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"Be Grateful You Don't Have a Real Disease": Understanding Rare Disease Relationships

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Presented at CHI 2017

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"Be Grateful You Don't Have a Real Disease": Understanding Rare Disease Relationships

  1. 1. “Be Grateful You Don’t Have a Real Disease”: Understanding Rare Disease Relationships Haley MacLeod Grace Bastin Leslie Liu Katie A. Siek Kay Connelly School of Informatics & Computing Indiana University @haley_macleod ww.haleymacleod.com
  2. 2. Rare Diseases < 0.05%
  3. 3. Amyotrophic Lateral Sclerosis (ALS) < 0.02%
  4. 4. There are over 7,000 different rare diseases.
  5. 5. 10%of the world’s population has a rare disease.
  6. 6. If everyone with a rare disease lived in the same country, it would be the world’sthirdmostpopulousnation. Rare World China India
  7. 7. Are there are common problems experienced by people with rare diseases that can be addressed through design?
  8. 8. • 75% of people with rare diseases experience depression • 86% experience anxiety • 65% are isolated from friends/family • 70% have reduced interaction with family/friends • 90% worry about the future (Global Genes Project, 2013)
  9. 9. Types of Social Support (Cutrona & Suhr, 1992) • Informational support • Emotional support • Esteem support • Network support • Tangible aid All of these are beneficial when delivered appropriately
  10. 10. In sociotechnical systems….. (Adams et al, ‘14, Braithwaite et al. ‘99, Civan et al. ’07, Coulson et al. ’07, Coursaris et al. ‘09, Evans et al. ’12, Fukkink et al. ’11, Loader et al. ‘02, Mccormack ’10, Turner-McGrievy et al. ’13) • Informational and emotional support are very common • Esteem support is uncommon • Network support is uncommon • Tangible aid is uncommon
  11. 11. (MacLeod et al., 2016) • 11 active participants • 5 rare diseases • 10 activities • 22 weeks Asynchronous Remote Communities (ARC)
  12. 12. 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. Diary Study
  13. 13. (Moncur et al. 2014)
  14. 14. For the next activity, I've set up a "Rant Line" - the number for it is [omitted]. You can call it or send texts or photos anytime you feel like you need/want to rant about something. Keep that in mind for the rest of the week and over the weekend. Rant Line (Google Voice) More on the ARC Method Wednesday 14:30 Room 111
  15. 15. • Outlook & Self-Image • Relationships Outside of Rare World • Relationships Within Rare World Analysis
  16. 16. I call it ‘RareWorld’. It’s very difficult. The receptionist doesn’t understand, the doctor doesn’t understand. No one’s heard of it. It’sareallystrangespottobein. (MacLeod et al. 2015)
  17. 17. Outlook & Self-Image
  18. 18. “… we were sharing about a main feature in our lives and something we were proudof.” (P8)
  19. 19. “I tried not talking about my disease at all or how I feel or what’s happening to me medically, because when I respond to their questions of “how are you doing?” with honesty, theirnextcomment isalwaysthatIamdwellingonmyillness and I need more activities in my life. TowhichIalwaysagree. And feel discounted every time it happens”(P7)
  20. 20. Relationships Outside of Rare World
  21. 21. “I’ve been abandoned by most of my friends. Nobody comes visit, nobody calls me. Itgetsverylonelyandverydepressing” (P10)
  22. 22. “It’s minimizing, [t]hose kind of comments, especially the first, ‘atleastyoudonothavesomethingserious, likecancer.’[Cancer], not minimizing it at all, is not the only financially, emotionally, physically, mentally devastating disease. Butitistheonly[one][t]hat manyhaveheardof.It has a face.” (P2)
  23. 23. • “Are there any projects you could use help on?... Could I pick up anything for you at the store?”(P8) • “What kind of routine household chores do you need help with?”(P2) • “What kind of limitations does XXX cause you?” (P11)
  24. 24. Relationships Inside of Rare World
  25. 25. “the [online] support groups are where I find the best support” (P5)
  26. 26. “I subscribe to Google scholar for research on [disease name] as soon as it’s published. I don’t always understand the biochem information, but IsharetheresearchpaperwithFacebook[…] and there is usually someonewhocanputthe informationintounderstandableEnglishformeLOL” (P7)
  27. 27. “I am glad that I got to be a part of this experience. I learned a lot about other people and their conditions, and thatweareALLbasicallyfightingthesamebattles...”
  28. 28. Networked Peer Support in Rare World
  29. 29. Types of Social Support • Informational support • Emotional support • Esteem support • Network support • Tangible aid Provided by online communities within Rare World
  30. 30. Barriers to Tangible Aid • Not presently being provided by friends and family • Often requires collocation • Rare diseases are rare (hard to find peers locally) • Symptoms are similar
  31. 31. (Bellotti et al. ’14) Timebanks… “organization in which membersearn‘timedollars’ forprovidinganykindofservice (from apple picking to zoology lessons) to others. Time dollars are essentially ‘minted’ when a service recipient is debited by the same amount of time dollars that the provider is credited with.”
  32. 32. (Terveen et al. ’05) Social Matching… “…recommender systems that happen to recommend people instead of (say) movies or books or documents.”
  33. 33. We propose extending research on time banking and social matching to help people with rare diseases connect with people with differentrare diseases, by focusing on abilities, skills, and expertise.
  34. 34. •Abilities:physiological capabilities or symptomatic limitations •Skills:acquired abilities, learned through experience or study • Expertise:acquired through formal education, certification, or professional experience
  35. 35. Larry HereditaryAngioedema Mary InclusionBodyMyositis Earns time $ for helping
  36. 36. Larry HereditaryAngioedema Olivia KallmannSyndrome Spends time $ to get help from
  37. 37. We see this approach as having potential benefits for rare disease communities, for whom tangible support is limited and difficult to coordinate.
  38. 38. • Many people with rare diseases experience numerous challenges and barriers to receiving support from outside of this Rare World bubble. • This helps overcome geographic and symptomatic barriers to tangible support that may exist within disease specific communities. • We propose matching people with different rare diseases to facilitate peer support within RareWorld. Haley MacLeod Grace Bastin Leslie Liu Katie Siek Kay Connelly www.haleymacleod.com @haley_macleod