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
    9/29/2009
    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
    9/29/2009
    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