rare world: towards technology for rare diseases

Download Rare World: Towards Technology for Rare Diseases

Post on 10-Aug-2015

45 views

Category:

Technology

1 download

Embed Size (px)

TRANSCRIPT

  1. 1. RARE WORLD: TOWARDSTECHNOLOGYFORRAREDISEASES Haley MacLeod Kim Oakes Danika Geisler Kay Connelly Katie Siek School of Informatics and Computing Indiana University @haley_macleod www.haleymacleod.com
  2. 2. Amyotrophic Lateral Sclerosis (ALS) < 0.05%
  3. 3. There are over 7,000 dierent rare diseases.
  4. 4. 10% of the worlds population has a rare disease.
  5. 5. Only 3% of the worlds population uses Twitter.
  6. 6. If everyone with a rare disease lived in the same country, it would be the worlds third most populous nation.
  7. 7. Are there common problems experienced by people with rare diseases that can be addressed through design?
  8. 8. 1. A prole of people with rare diseases 2. Similarities and dierences between rare and common chronic diseases 3. Opportunities for technology to address these challenges
  9. 9. I call it Rare World. Its very dicult. The receptionist doesnt understand, the doctor doesnt understand. No ones heard of it. Its a really strange spot to be in.
  10. 10. Method Recruitment RareShare RareConnect The Rare Disease Foundation Facebook groups Rare Disease Communities
  11. 11. 53% from USA 13 dierent conditions (S1 S15) 2 multiple conditions (M1, M2) 2 undiagnosed (U1, U2) 19 participantsMethod Participants
  12. 12. Method Procedure Semi-Structured Interviews Experience living with the condition Relationships and support Use of technology and information management Sensemaking
  13. 13. Method Analysis Inductive Qualitative Methods Participants reviewed the paper before submission None requested any changes
  14. 14. 1. Prole of People with Rare Diseases
  15. 15. Friends Family Members Peer Supporters Patients and Advocates Copers Researchers Record Keepers {Role as
  16. 16. Friends Family Members Peer Supporters Patients and Advocates Copers Researchers Record Keepers {Role as
  17. 17. Theres nothing to see. Nobodys ever heard of it. I mean, if I said I had Multiple Sclerosis everybody would know what I was talking about and they would know what to expect...Its not obvious that there is anything wrong with me at all. So I think that some people think that maybe Im putting them on a bit. S11 Friends / Family Members / Patients / Record Keepers
  18. 18. Some want to be there for you, but they are so scared that they dont even know how to talk to you. Then you nd the friends who come out of the woodwork when you dont know what to do some of the people who you thought would really be there actually werent. S12 Friends / Family Members / Patients / Record Keepers
  19. 19. [My friends] never realised that it can be life-threatening. When I started my ght for my son, and when I called them [for support] they would say We cant come because we have to go shopping And then I said, Im having this life struggle for my baby. You guys are my friends, I expect you there....So they were a little slow in understanding how important this was but its because I never made a big fuss about it. S3 Friends / Family Members / Patients / Record Keepers
  20. 20. I feel sorry for [my wife] because she has to take care of a husband who is in much worse shape than hershes had to cope with a husband whos lost a lot of his abilities and shes done very well with it...Im sure she doesnt like it but what are you going to do? I mean, you know, thats what marriage is about. S5 Friends / Family Members / Patients / Record Keepers
  21. 21. Earlier I just had to tell him, You can stay in denial all you want to, but when I say I need you to do something...you just have to do it. And for a long time he used to say things like...Do you really need that cane? And I said, Yes I do. Stop asking me questions like that. S6 Friends / Family Members / Patients / Record Keepers
  22. 22. I actually have to smuggle [the medicine] from other countries. For my son, one shot is around [600 or $800]...so I have to have three or four vials of the medicine. And Im keeping it only for my son because I dont earn that much money that I can have a shot for me. So its on destiny whether I will live another day. S3 Friends / Family Members / Patients / Record Keepers
  23. 23. I just hope and pray that, if I have an attack, what happens at the hospital is that they listen. We did have an incident where they tried to tell me I had a tummy bug and it wasnt until I actually passed out lying down that then they thought, Okay, we need to start listening to this person. S14 Friends / Family Members / Patients / Record Keepers
  24. 24. I had to suck it up and go back because no one would take me. Youd call them, youd tell them what youve got and they look it up, theyd say, Oh, no, Im sorry we dont treat that. I heard that over and over and over again. But I had to suck it up and go back, because no one else would take me. S13 Friends / Family Members / Patients / Record Keepers
  25. 25. They were all like, We dont know what it is. We dont want to take this risk. So go away. We have other problems, other patients. So I told them, Okay, go on Google and Google it. No, no, go to somebody elses door. So we lost a lot of hoursAnd thats when I said Okay, Im going to learn to give myself the shot. S3 Friends / Family Members / Patients / Record Keepers
  26. 26. I said, This is my little book where I write down what you tell me to do, or changes that we make. And he said, Oh you wont need that. We keep charts of everything and blah blah blah. Then he started asking me all these questions, When did you do this? When did you do that? So I just kind of whipped my little book out and I said, Okay, let me just look at my book and Ill tell you. It was really kind of funny. S6 Friends / Family Members / Patients / Record Keepers
  27. 27. We would go in to see a specialist or an expert and [my mother] would just immediately, rst thing, hand [the medical resume] to the doctor and say, Read this rst before we start Im a medical doctor, heres her medical summary, its on two pages. Read this rst and then well start the appointment. And I saw the power in that. U1 Friends / Family Members / Patients / Record Keepers
  28. 28. The surgeons speak in very bullet point kind of language, so a patient has to get used to boiling things down to one or two sentences to speaking in surgeon-ese, bullet-ese. U1 Friends / Family Members / Patients / Record Keepers
  29. 29. Ive had these cards made up through the myositis association. It looks like a little gift card. Its got your name on the front...It tells you what to do about the disease and its one of the greatest tools to have because when I go somewhere and if something happens to me, I just give them that card. And theyve got everything there that they need. S8 Friends / Family Members / Patients / Record Keepers
  30. 30. 2. Common vs. Rare Chronic Diseases
  31. 31. Friends Communicating unfamiliar diseases Losing friendships Downplaying symptoms Family Members Guilt about impact on caregivers Caregivers in denial Making sacrices for family members Advocates Awareness campaigns, fundraisers Running research or support groups Political projects & lawsuits Patients Ill informed physicians Unable to nd replacement doctors Reducing reliance on doctors Active and empowered patients Record Keepers For personal use As as communication tool Researchers Reading research papers Limited information available Perception of self as intelligent Peer Supporters Sharing ndings, trading resources, social support, asking questions Global connections Privacy concerns Inactivity in specic communities Copers Full spectrum of attitudes & emotions Struggling to stay optimistic It could be worse
  32. 32. Friends Family Members Advocates Patients Record Keepers Researchers Peer Supporters Copers DierentSimilar
  33. 33. 3. Implications for technology
  34. 34. Expanding the Care Network Its Who I Am Leveraging Existing Platforms Patient-Provider Relationship
  35. 35. Expanding the Care Network Its Who I Am Leveraging Existing Platforms Patient-Provider Relationship
  36. 36. (Consolvo et al., 2013) Expanding the Care Network/ Its Who I Am
  37. 37. We encourage HCI researchers to design for a slow discovery process through which people with rare disease can disseminate information about their conditions. Expanding the Care Network/ Its Who I Am
  38. 38. (Liu al., 2013) Expanding the Care Network/ Its Who I Am
  39. 39. We need to investigate how to help caregivers accept a new diagnosis and work towards providing them with the ability to catch up when they are ready. Expanding the Care Network/ Its Who I Am
  40. 40. people in our case studies explain that their everyday life as a whole is what matters (Ballegaard et al. 2008) addressing patient's experience of a disease as a closely interwoven matter of both the medical and personal side of an individual (Huh et al. 2014) nding the right balance between pleasurable activities and the desired state of health (Mamykina et al. 2006) Expanding the Care Network/ Its Who I Am
  41. 41. Its who I am. S3 This is part of my story. S12 I know how I am. S5 Expanding the Care Network/ Its Who I Am
  42. 42. Expanding the Care Network/ Its Who I Am
  43. 43. We must investigate mechanisms for advocacy outreach, public response to these initiatives, and how the initiative improves the initial outreach aims. Expanding the Care Network/ Its Who I Am
  44. 44. Haley MacLeod hemacleo@indiana.edu Kim Oakes kimoakes@indiana.edu Danika Geisler djgeisle@indiana.edu Kay Connelly connelly@indiana.edu Katie Siek ksiek@indiana.edu

Recommended

View more >