patient problem-solving on the web: how do patients use web forums to cope with chronic disease? [4...

Billman, D. et al.:Patient Problem-Solving on the Web: How do Patients Use Web Forums to Cope with Chronic Disease?

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Patient Problem-Solving on the Web: How do Patients Use Web

Forumsto Cope with Chronic Disease?

Dorrit Billman CSLI Stanford & Palo Alto Research Corp

Diane SchianoPalo Alto Research Corp

Lee GugertyClemson, Psychology

Medicine2.0 Sept 4, 2008

Overall Goals of Research

• Understand current practices in peer-to-peer, medical, online communities on chronic disease.

• Identify difficult cognitive problems that participants bring to the community.

• Investigate responses/solutions developed in community.

• Design better support for current & new activities.


Approach

• Study existing peer-to-peer messages.• Design sample: diseases, sites, threads, messages.

Breadth vs. depth. • Design coding: characterize broadly & flag special

interests. Cognitive vs. affective.• Exploratory analysis.• Hypothesize about strengths, weaknesses, &

determinants.• Design for improved & expanded support.


Related work re: peer-generated content about health conditions

• On line (bboard) health communities are richly supportive

• Content analysis


Study content with focus on topics discussedBlank &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 contentWhat 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)

This study

• Analyzes content in successful, peer2peer communities

• Understand cognition of individuals in context of community

• Ongoing--Assess needs and support

• Future --Use current success and needs for guides to design


Design sample: DISEASES, sites, threads, messages.

• CHRONIC diseases– NEED

– Relevance: self-management, patient experts, long-term community, mixed expertise.

• Select for contrast: – rarity,

– control,

– severity.


Design sample: DISEASES, sites, threads, messages.

• Diabetes (Type 2): – epidemic,– very controllable and lifestyle has high impact, – severe but only if uncontrolled.

• Multiple Sclerosis: – frequent,– little control, – variable

• Reflex Sympathetic Dystrophy/ Chronic Regional Pain Syndrome: – low frequency,– ~nothing predictable,– Variable, often debilitating.


Design sample: diseases, sites, threads, messages.

• Sites: established, successful, communities– American Diabetes Association: Adult Type II– BrainTalk (neurological site): RSD and MS forum

• Threads– 100/site, 20 messages 5 times, each over 6 month period, in

2007 and 2008• Messages

– First messages are most efficient way of sampling issues brought to community.

– [Whole threads later.]

• Breadth-depth choices.


Code Development1) Sensitive to particulars of site and context2) Applicable to diverse sites3) Replicable by diverse researchers4) Efficient


Code Development1) Form and content (from principles)


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, financialSocial- 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.

Code Development2) Distinctive patterns (from data)


SchemaWe 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.

Code Development

3) Flag topics of special interest to problem solving and reasoning.


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.

PRELIMINARY Results

• Prevalence of various message types overall and by group.– Topic: physio… (not mutually exclusive)

– Form: tell… (not mutually exclusive)

– Schema: GiveInfo… (mutually exclusive- whole message)

• Heuristic: differences of 10% would be “significant” chi2.

• [Invite discussion of reliability, method, analysis in question time.]


Frequency of Topic Types (in 300 messages)


Coding includes 1-3 prominence.

Users include multiple topic types when initiating threads. Average of 1.4 topic-types/message.Physio most prevalent.

.

Frequency of Topic TypesDiffer by Group


Mult-Sclerosis message topics are heavily physio.

RSD message topics are very diverse.

Coding includes 1-2 prominence.

Form of 1st Messages(in 300 messages)


TELL predominates (89%).Bare questions are very rare.Long tail of illocutionary acts- important for community?

“other” includes {thanks, apology, message testing, group games}

Ask and Tell Codes by Group


Groups TELLing has different focus:Diabetes very personal, little general;MS and RSD the reverse.STABLE difference???


Schema of 1st-Message(Coding is mutually exclusive)

Overall, the majority of messagesfit into two schema,Prob+Quest and GiveInfo.

Chronic Condition 1st-Message Types


But patterns differ by group.Diabetes is problem-focused.RSD is varied.

1st-Message Types by Site


Problem & Question Examples


DiabetesImpact of activities on blood glucoseWhether to use specialistHow to continue activities

Multiple SclerosisDiagnosis limbo, asking how people were diagnosedAsking whether problems are MS related (spasms)

RSDInteraction with doctors, prep for nonexpertsSymptom managementHelp interpreting test results

• Community function– Role of patient experts, and all as contributors– “Long tail” of message types contributes to

community– Message complexity is important (writing &

reading)


• Cognitive work● Discussing causal topics is related to control &

self-management● Forum aid problem solving by providing own

time & own group, to address external events

Hypotheses on Function

• Assess outcomes for individual (resolution)and group (extensions, reuse)

• Understand diversity of functions in successful communities

• Identify hard problems, esp ones limited by information

• Identify benefits of different organizations – threads versus individuals.

• Reduce cost structure of interaction


Future and Design

patient problem-solving on the web: how do patients use web forums to cope with chronic disease? [4...

Health & Medicine

design medicine2

peer messages

design sample

chronic diseases

study content

design coding

psychology medicine2

design better support