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Uncertainty in Chronic Illness and Patients' Online Experience

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Ethnographic study of chronic illness patients about how they used online resources

Ethnographic study of chronic illness patients about how they used online resources

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  • Abstract:Many people go online for information and support in response to life experiences such as parenting, finding a job, and investigating an illness. Online resources may be particularly important to those with a chronic illness whose diagnosis and treatment is uncertain. This paper focuses on people with Lyme disease, the most common vector-borne illness in the U.S. today. The patient experience of Lyme disease is fraught with variability in symptoms, lack of physician experience, and uncertainty surrounding treatment and the progress of the disease. This uncertainty is reflected in an active, vocal, and contradictory presence on the web. We studied a sample of patients, finding that more difficulty in patients’ real world experience predicted their more assertive use of online health resources. We describe their experiences and suggest online tools that make differing viewpoints more transparent and support an iterative search process that could help patients to manage their illness.
  • So in our case, potential users = people with chronic illnessTechnology = web/online tools?in addition to family members, friends, doctors (etc.)in managing their condition(s)Application of UCD?
  • The number of people with chronic illness in the U.S. alone is projected to reach 171 million by the year 2030 (1998 U.S. National Medical Expenditure Panel Survey) Patients tend to take a more active role in managing chronic conditions than in getting treatment for acute conditions [8]People with chronic illness can easily find a multitude of online resources for understanding and managing their illness, diagnosis and treatment and for finding others like themselves [2,28].Online health information can be inaccurate, incomplete, controversial, misleading, and otherwise problematic for individuals with health questions [9,16].A national sample longitudinal study suggests that people who use health resources online experience increased depressive symptoms, possibly explained by their encountering confusing, inconsistent, and hard to verify online information and conflict in online support groups [4]. Other studies suggest more positive outcomes for some patients (e.g., [5]).
  • All these factors make being a discerning reader (as a patient) difficult, and automating/enforcing standardizd assessment outright impossible, since there is no standard, and there is no agreement
  • Chronic Lyme is such an illnessWe use the term chronic Lyme throughout this talk, and any publications that result from this work, as it was the termuniversally preferred by the participants in our study.
  • Chronic Lyme patients already have a strong, and in many ways very organized, presence online. There is a plethora of sites dedicated to managing Lyme, Lyme activism, and so on.As a result, this population is perfect for this work: 1) the illness is fraught with controversy and uncertainty that forces individuals to take control of decision-making and 2) they are already using online resources, and so the design of new technologies would build upon the existing involvement with the internet
  • Online health resources: for both information and supportMany prior studies have explored the use of online resources by individuals with chronic conditions, focusing on how individuals use a specific resource, such as support groups, or the patient-doctor relationshipWe explore the whole gamut of resources in use online, as well as patients’ experiences with their medical care, and how the two are related.
  • Prior to beginning the study we:informally with people we had met who had Lyme diseasesearched the literature on Lyme diseasedocumented online resources for Lyme disease and health sites that contain information or communications relevant to Lyme diseaseFour of the five researchers have experience with chronic illnessOne author has chronic Lyme diseaseAnother is a health professional whose research and clinical work both focus on patients with complex chronic diseasesThesethigns together allowed us a better understanding of the population we studiedSurvey had total 35 questionsUsed a series of Likert scale and open ended questionsAsked about:Experience withLyme diseaseOnline useTrust and beliefDemographicsDistributed surveys using SurveyMonkeyOffered a $50 raffle as an incentive to participate. The first and second authors conducted in-depth interviews to gain more insight into patients’ experiencesBy phone: 20 participantsUsing instant messenger: 1 participantParticipants were paid $10/hourA short pre-interview questionnaire  to list the online and offline resources usedA series of questions about:experience with their diseasecurrent and past health practitioners, treatment goals, and satisfaction with treatmentparticularly helpful or unhelpful online resources (using the questionnaire as a basis)whether they were currently seeking different types of online resources
  • Our analysis was drawn from the bottom-up coding method used in grounded theory [24].The first author coded the transcripts of all the interviewsAs I either conducted or was present at the vast majorityof the interviewsAs a group, we coded for concepts that were significant in the data, such as abstract representations of usage of health information, experience of disease, relationships with people, online interactions, and so forthI created posters for each participant to facilitate group work – this is in Jen’s officeThe resulting list of 35 original codes was then grouped into themes (“axial coding”)The themes were then integrated into findings by contextualizing them within our problem space of chronic disease and online information and communication
  • A lag of 2 years between onset and diagnosis.
  • Transcript

    • 1. Suffering Warriors:Uncertainty in Chronic Illnessand Patients’ Online Experience
      1Kateryna Kuksenok
      2Kelly Waldman
      3Jennifer Mankoff
      3Sara Kiesler
      4Mary Ann Sevick
      9/29/2009
      1
    • 2. What is this talk about?
      Ethnographic study of chronic illness patients about how they used online resources
      Human-computer interaction research
      User-centered design
      Study potential users through surveys, interviews, observation, and so on
      Formulate design recommendations
      Create novel technology!
      9/29/2009
      2
    • 3. Talk Outline
      • Introduction
      Methods
      Results
      Design Recommendations
      Future Work
      9/29/2009
      3
    • 4. Chronic Illness and the Internet
      Many people in the U.S. have one or more chronic illnesses
      Projected to reach 171 million by 2030 (1998 U.S. National Medical Expenditure Panel Survey)
      Chronic illness patients take a more active role in management
      Clark, N. M. , Management of chronic disease by patients. Annual Review of Public Health, 2003
      9/29/2009
      4
    • 5. Chronic Illness and the Internet
      9/29/2009
      5
      There is a multitude of online resources useful for chronic illness patients:
      Understanding the illness
      Progression
      Diagnosis
      Managing the illness
      Treatment
      Symptoms
      Finding others that have a similar experience
      (Baker, L., Wagner, T. H., Singer, S., & Bundorf, M. K., Journal of the American Medical Association, 2003; Harris Interactive, cited in the New York Times, 2007)
    • 6. Chronic Illness and the Internet
      However, these resources can have problems.
      They can be:
      inaccurate
      incomplete
      controversial
      misleading
      …and so on
      (Cline, R. J., & Haynes, K. M., 2001; Eysenbach, G., Powell, J., Kuss, O., & Sa, E. R. 2002)
      9/29/2009
      6
    • 7. What can be done to help?
      Controlling what health information is available
      Automating assessment of the accuracy of online health information
      Developing and enforcing standards
      Encouraging discerning readership in patients
      Anything else?
      9/29/2009
      7
    • 8. So do online resources help or hurt?
      Increased depressive symptoms as a result of
      Problems with online health information
      Conflict in online support groups
      Bessier, K., Pressman, S., Kiesler, S., & Kraut, R. ,2009
      Increased feeling of self-efficacy and control
      Broom, A.Qualitative Health Research, 2005
      9/29/2009
      8
    • 9. Consider a Chronic Illness that:
      Has no conclusive studies showing how it may be cured
      Has many different types of symptoms
      May easily be confused with other illnesses
      Has highly varied and complex progression, diagnosis, and treatment…
      … all of which are fraught with disagreement and controversy among medical professionals
      9/29/2009
      9
    • 10. Consider Chronic Lyme Disease
      Symptoms include fatigue, joint or muscle pain, headaches, rashes, and neurological symptoms
      Difficulty getting tested and diagnosed
      Difficulty finding a doctor who believes the diagnosis, is experienced with Lyme disease, and is willing to treat
      Even the term “chronic Lyme disease” is controversial
      9/29/2009
      10
    • 11. An Online Voice
      There are many resources focused on Lyme disease:
      A multitude of websites aimed to provide information on prevention, diagnosis, and treatment
      A strong online community, active on discussion boards, blogs, social networking sites, mailing lists, and so on
      Figure 1: Excerpt from a website for blogging about experiences with Lyme disease.
      9/29/2009
      11
    • 12. The Study
      The population: chronic Lyme disease patients
      The technology: online health resources
      Topics explored:
      What factors predict increased online resource use?
      What strategies support effective online resource use?
      What issues cause patients to stop using online resources?
      Recommendations for design:
      Tools that support patient assessment of information
      Web services that support transparency and self-advocacy in the doctor-patient relationship
      9/29/2009
      12
    • 13. Talk Outline
      Introduction
      • Methods
      Results
      Design Recommendations
      Future Work
      9/29/2009
      13
    • 14. Data Collection
      Sampled online & offline
      Survey: 128 self-described Lyme disease patients
      Interviews: 21 of the survey participants
      9/29/2009
      14
    • 15. Interview Data Analysis
      Bottom-up qualitative analysis (grounded theory: Glaser, B., & Strauss, A. The discovery of grounded theory: Strategies for qualitative research. Aldine Transaction. 1967. )
      Segmenting and labeling interview transcripts
      Iterative group exercises in finding significant themes
      Grouping annotated segments into themes
      Contextualizing themes
      This is called “coding”
      Entirely unrelated to programming
      9/29/2009
      15
    • 16. Talk Outline
      Introduction
      Methods
      • Results
      Design Recommendations
      Future Work
      9/29/2009
      16
    • 17. Survey Results
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      17
    • 18. Survey Results
      9/29/2009
      18
      How does real-world experience with the illness
      relate to the use of online resources?
    • 19. Interview Results
      9/29/2009
      19
      Using online resources
      Some participants were reluctant to consider Lyme as a possibility
      One participant, for example, was wary of becoming an “Internet hypochondriac, so at first, I completely ignored any suggestions of things like [Lyme disease].”
    • 20. Interview Results
      9/29/2009
      20
      Using online resources
      I don’t want my life to start revolving around Lyme disease, and these websites, so I’ve stopped actively looking for more, now that … I’ve found websites that offer support (Jane)
    • 21. What are these “online resources?”
      9/29/2009
      21
      Medical progress and monitoring
      Health content and information
      Medical Diaries
      Research Articles
      Medical Records
      Portals
      Email
      Forums / Chat
      Blogs / Twitter
      Interpersonal and community communication
      What is the patient’s role?
      content consumers
      content consumers and producers
      organizations
      peers
      Who are the content producers?
      doctors
    • 22. Interview Results
      9/29/2009
      22
      Medical progress and monitoring (8 participants)
    • 23. Interview Results
      9/29/2009
      23
      Medical progress and monitoring (8 participants)
      Some participants recorded medical details for years.
      However:
      frequency and quantity of records tended to decrease over time
      records were not identified as useful in patient-doctor relationship
      personal record keeping was not always helpful.
      What is the role of technology?
      Information was occasionally stored on paper (not computers)
      2 participants used LymeLog
    • 24. Interview Results
      9/29/2009
      24
      Interpersonal and community communication (all)
      every time I talked to a different family member or friend, I had to answer all of the same questions over and over again so I started [a] blog… (Susan)
    • 25. Interview Results
      9/29/2009
      25
      Health content and information (all)
      If it’s from a medical school, a medical background, a doctor, or of that nature, that is the ones I will pick to read. I won’t just pick something that, you know, some Joe Blow that I’ve never heard of to read it. … I just don’t pick any old thing to read (Jen).
    • 26. Interview Results
      9/29/2009
      26
      Health content and information (all)
      … as soon as somebody says, “I tried this new thing”, they’ll say, “I noticed that you never posted before. Are you trying to sell us something, or what’s your connection to this?” So there’s … somebody who can kind of be policing that. And even regular posters, if they post about something that’s a little outside the mainstream… they will say, “Do you have any studies to back that up? … why is that true for you?” (Karen)
    • 27. Interview Results
      9/29/2009
      27
      Health content and information (all)
      …one person will write in something or another and they will have attachments with what they're writing about, and from that attachment it takes you on into another area of Lyme, and from there you gain even more knowledge about it. So it's not just a Lyme board that has people just talking about their symptoms all the time.. (Jen)
    • 28. What roles do patients play?
      9/29/2009
      28
      The manager role
      The warrior role
      Managing symptoms
      Fighting for health
      Managing doctors
      Fighting for respect
      Fighting for community
    • 29. What roles do patients play?
      9/29/2009
      29
      The manager role
      The warrior role
      Managing symptoms
      Fighting for health
      Managing doctors
      Fighting for respect
      Fighting for community
    • 30. What roles do patients play?
      9/29/2009
      30
      The manager role
      The warrior role
      Managing symptoms
      Fighting for health
      Managing doctors
      Fighting for respect
      Fighting for community
    • 31. What roles do patients play?
      9/29/2009
      31
      The manager role
      The warrior role
      Managing symptoms
      Fighting for health
      Managing doctors
      Fighting for respect
      Fighting for community
    • 32. What roles do patients play?
      9/29/2009
      32
      The manager role
      The warrior role
      Managing symptoms
      Fighting for health
      Managing doctors
      Fighting for respect
      Fighting for community
    • 33. Results: Summary
      Attitudes patients expressed about online resources were largely consistent with prior work
      Unmet needs (emotional and physical) drove people online
      Trusting one’s current treating physician was predictive of using online health resources – why?
      Online resources helped almost half of the patients find a trusted doctor
      Others said a trusted doctor encouraged online resource use
      Having taught themselves, many patients helped educate others
      9/29/2009
      33
    • 34. Talk Outline
      Introduction
      Methods
      Results
      • Design Recommendations
      Future Work
      9/29/2009
      34
    • 35. Tools to Build
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      35
      #1
      Search tool to:
      Juxtapose information from different kinds of resources
      Support learning sophisticated information seeking
      #2
      • Tool for extraction and visualization of viewpoints
      • 36. Work has begun to extract information about viewpoints in other domain
      #3
      • Tool for extraction and visualization of key features associated with credibility
      • 37. Work has been done to identify many features related to credibility
    • General Recommendations
      9/29/2009
      36
      Engaging multiple aspects of the patient experience by supplementing current social resources
      Managerial
      Social
      Advocacy
      Facilitating private information exchange of medical information
      Supports patients in managing multiple doctors
      Give patients a voice and support transparency
      views of their own data
      what their doctors are considering (risks and tradeoffs)
    • 38. Talk Outline
      Introduction
      Methods
      Results
      Design Recommendations
      • Future Work
      9/29/2009
      37
    • 39. Future Work
      Other chronic illnesses
      This study: focus on a single, very contentious, disease.
      Future studies: compare samples like this one to other groups
      Development of tools suggested by current data
      9/29/2009
      38
    • 40. We would like to thank…
      9/29/2009
      39
      Funders:
      And all the people who took the time to participate in this study.
    • 41. Participant Population
      9/29/2009
      40