Patient Problem-Solving on the Web: How do Patients Use Web Forums to Cope with Chronic Disease? [4 1530 Aud Billman]


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Patient Problem-Solving on the Web: How do Patients Use Web Forums to Cope with Chronic Disease? [4 1530 Aud Billman]

  1. 1. Billman, D. et al.: Patient Problem-Solving on the Web: How do Patients Use Web Forums to Cope with Chronic Disease? <ul><li>This slideshow, presented at Medicine 2.0’08 , Sept 4/5 th , 2008, in Toronto, was uploaded on behalf of the presenter by the Medicine 2.0 team </li></ul><ul><li>Do not miss the next Medicine 2.0 congress on 17/18th Sept 2009 ( ) </li></ul><ul><li>Order Audio Recordings (mp3) of Medicine 2.0’08 presentations at </li></ul>
  2. 2. Patient Problem-Solving on the Web: How do Patients Use Web Forums to Cope with Chronic Disease? Dorrit Billman CSLI Stanford & Palo Alto Research Corp Diane Schiano Palo Alto Research Corp Lee Gugerty Clemson, Psychology Medicine2.0 Sept 4, 2008
  3. 3. Overall Goals of Research <ul><li>Understand current practices in peer-to-peer, medical, online communities on chronic disease. </li></ul><ul><li>Identify difficult cognitive problems that participants bring to the community. </li></ul><ul><li>Investigate responses/solutions developed in community. </li></ul><ul><li>Design better support for current & new activities. </li></ul>Medicine2.0 Sept 4, 2008
  4. 4. Approach <ul><li>Study existing peer-to-peer messages . </li></ul><ul><li>Design sample: diseases, sites, threads, messages. Breadth vs. depth. </li></ul><ul><li>Design coding: characterize broadly & flag special interests. Cognitive vs. affective. </li></ul><ul><li>Exploratory analysis. </li></ul><ul><li>Hypothesize about strengths, weaknesses, & determinants. </li></ul><ul><li>Design for improved & expanded support. </li></ul>Medicine2.0 Sept 4, 2008
  5. 5. Related work re: peer-generated content about health conditions <ul><li>On line (bboard) health communities are richly supportive </li></ul><ul><li>Content analysis </li></ul>Medicine2.0 Sept 4, 2008 Study content with focus on topics discussed Blank &Adams-Biodnieks 07 (breast & prostate cancer) Kenen et al 07(cancer risk) Lasker et al 05 (cirrhosis) Meier et al 07 (cancer survivors) Study activity through content What about a message increases chance of reply to first-postings (Kraut et al) How do people use types of information: shared health variables (Frost & Massagli, 08)
  6. 6. This study <ul><li>Analyzes content in successful, peer2peer communities </li></ul><ul><li>Understand cognition of individuals in context of community </li></ul><ul><li>Ongoing--Assess needs and support </li></ul><ul><li>Future --Use current success and needs for guides to design </li></ul>Medicine2.0 Sept 4, 2008
  7. 7. Design sample: DISEASES, sites, threads, messages. <ul><li>CHRONIC diseases </li></ul><ul><ul><li>NEED </li></ul></ul><ul><ul><li>Relevance: self-management, patient experts, long-term community, mixed expertise. </li></ul></ul><ul><li>Select for contrast: </li></ul><ul><ul><li>rarity, </li></ul></ul><ul><ul><li>control, </li></ul></ul><ul><ul><li>severity. </li></ul></ul>Medicine2.0 Sept 4, 2008
  8. 8. Design sample: DISEASES, sites, threads, messages. <ul><li>Diabetes (Type 2): </li></ul><ul><ul><li>epidemic, </li></ul></ul><ul><ul><li>very controllable and lifestyle has high impact, </li></ul></ul><ul><ul><li>severe but only if uncontrolled. </li></ul></ul><ul><li>Multiple Sclerosis : </li></ul><ul><ul><li>frequent, </li></ul></ul><ul><ul><li>little control, </li></ul></ul><ul><ul><li>variable </li></ul></ul><ul><li>Reflex Sympathetic Dystrophy / Chronic Regional Pain Syndrome: </li></ul><ul><ul><li>low frequency, </li></ul></ul><ul><ul><li>~nothing predictable, </li></ul></ul><ul><ul><li>Variable, often debilitating. </li></ul></ul>Medicine2.0 Sept 4, 2008
  9. 9. Design sample: diseases, sites, threads, messages. <ul><li>Sites: established, successful, communities </li></ul><ul><ul><li>American Diabetes Association: Adult Type II </li></ul></ul><ul><ul><li>BrainTalk (neurological site): RSD and MS forum </li></ul></ul><ul><li>Threads </li></ul><ul><ul><li>100/site, 20 messages 5 times, each over 6 month period, in 2007 and 2008 </li></ul></ul><ul><li>Messages </li></ul><ul><ul><li>First messages are most efficient way of sampling issues brought to community. </li></ul></ul><ul><ul><li>[Whole threads later.] </li></ul></ul><ul><li>Breadth-depth choices. </li></ul>Medicine2.0 Sept 4, 2008
  10. 10. Code Development <ul><li>Sensitive to particulars of site and context </li></ul><ul><li>Applicable to diverse sites </li></ul><ul><li>Replicable by diverse researchers </li></ul><ul><li>Efficient </li></ul>Medicine2.0 Sept 4, 2008
  11. 11. Code Development <ul><li>Form and content (from principles) </li></ul>Medicine2.0 Sept 4, 2008 Form What illocutionary force/speech acts are people using? Assumed asking for information and telling information. Codes= TELL, ASK, GREET, and OTHER Topic of Content What are people talking about? Physiological= disease mechanisms, treatments; personal or general. Pragmatic= interacting with health care, daily living, financial Social- Emotional= direct expressions: offering or requesting emotional support or advice. NonHealth=personal life, stories, public events, activities without One message can include multiple forms and topic types. Intent- significant part.
  12. 12. Code Development <ul><li>2) Distinctive patterns (from data) </li></ul>Medicine2.0 Sept 4, 2008 Schema We observed frequent, structured types of messages. -Give Information: post of general information relevant to health or condition. Not personal, not questioning . -Problem & Question: tells background circumstances about individual (usually but not necessarily self) about an undesired situation or problem; then asks explicitly for helping information, typically about what to do. -Status: Reports about individual’s status (usually self); may be evaluated positively, negatively, or neutral. No questions or requests. Personal reporting . - None : all messages not fitting one schema. Mutually exclusive.
  13. 13. Code Development <ul><li>3) Flag topics of special interest to problem solving and reasoning. </li></ul>Medicine2.0 Sept 4, 2008 Example Flags - causal: information about cause, mechanism, effects; general or personal -triggers: was there a clearly identified, health-relevant event in life of individual that prompted writing the message? -personal experience of others: does message ask for personal experience? -multiple diseases: comorbidity, alternative diseases, interactions.
  14. 14. PRELIMINARY Results <ul><li>Prevalence of various message types overall and by group. </li></ul><ul><ul><li>Topic: physio… (not mutually exclusive) </li></ul></ul><ul><ul><li>Form: tell… (not mutually exclusive) </li></ul></ul><ul><ul><li>Schema: GiveInfo… (mutually exclusive- whole message) </li></ul></ul><ul><li>Heuristic: differences of 10% would be “significant” chi2. </li></ul><ul><li>[Invite discussion of reliability, method, analysis in question time.] </li></ul>Medicine2.0 Sept 4, 2008
  15. 15. Frequency of Topic Types (in 300 messages) Medicine2.0 Sept 4, 2008 Coding includes 1-3 prominence. Users include multiple topic types when initiating threads. Average of 1.4 topic-types/message. Physio most prevalent. .
  16. 16. Frequency of Topic Types Differ by Group Medicine2.0 Sept 4, 2008 Mult-Sclerosis message topics are heavily physio. RSD message topics are very diverse . Coding includes 1-2 prominence.
  17. 17. Form of 1 st Messages (in 300 messages) Medicine2.0 Sept 4, 2008 TELL predominates (89%). Bare questions are very rare. Long tail of illocutionary acts- important for community? “ other” includes {thanks, apology, message testing, group games}
  18. 18. Ask and Tell Codes by Group Medicine2.0 Sept 4, 2008 Groups TELLing has different focus: Diabetes very personal, little general; MS and RSD the reverse. STABLE difference???
  19. 19. Medicine2.0 Sept 4, 2008 Schema of 1 st -Message (Coding is mutually exclusive) Overall, the majority of messages fit into two schema, Prob+Quest and GiveInfo.
  20. 20. Chronic Condition 1 st -Message Types Medicine2.0 Sept 4, 2008 But patterns differ by group. Diabetes is problem-focused. RSD is varied.
  21. 21. 1 st -Message Types by Site Medicine2.0 Sept 4, 2008
  22. 22. Problem & Question Examples Medicine2.0 Sept 4, 2008 Diabetes Impact of activities on blood glucose Whether to use specialist How to continue activities Multiple Sclerosis Diagnosis limbo, asking how people were diagnosed Asking whether problems are MS related (spasms) RSD Interaction with doctors, prep for nonexperts Symptom management Help interpreting test results
  23. 23. <ul><li>Community function </li></ul><ul><ul><li>Role of patient experts, and all as contributors </li></ul></ul><ul><ul><li>“ Long tail” of message types contributes to community </li></ul></ul><ul><ul><li>Message complexity is important (writing & reading) </li></ul></ul>Hypotheses on Function Medicine2.0 Sept 4, 2008 <ul><li>Cognitive work </li></ul><ul><ul><li>Discussing causal topics is related to control & self-management </li></ul></ul><ul><ul><li>Forum aid problem solving by providing own time & own group, to address external events </li></ul></ul>
  24. 24. <ul><li>Assess outcomes for individual (resolution)and group (extensions, reuse) </li></ul><ul><li>Understand diversity of functions in successful communities </li></ul><ul><li>Identify hard problems, esp ones limited by information </li></ul><ul><li>Identify benefits of different organizations – threads versus individuals. </li></ul><ul><li>Reduce cost structure of interaction </li></ul>Future and Design Medicine2.0 Sept 4, 2008
  25. 25. Medicine2.0 Sept 4, 2008