Uncertainty in Chronic Illness and Patients' Online Experience


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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.
  • Uncertainty in Chronic Illness and Patients' Online Experience

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