Praesentation C&T2007 070624 03 Ule

Online and Offline Integration in Virtual Communities of Patients – an Empirical Analysis 3rd International Conference on Communities and Technologies C&T 2007 Michigan, USA, June 28 - 30 2007 Achim Dannecker and Ulrike Lechner

Outline

Motivation – Relevance of our work

Research Model - Results

Discussion

Motivation

Medical information Online is important

Online Communities of Patients provide information and mutual support

“… providing patients with ‘disease-related information only’ worsens health-related quality of life (HRQOL) in inflammatory bowel disease… “

[Borgaonkar, M. R., G. Townson, et al. (2002). "Providing Disease-Related information worsens Health-Related Quality of Life in Inflammatory Bowel Disease.“ Inflamm Bowel Disease 8: 264-269.]

“… patients given a patient-developed guidebook of self-management skills experienced significantly improved health-related quality of life (HRQOL )…“

[Kennedy, A., A. Robinson, et al. (2003). "A randomised controlled trial to assess the impact of a package comprising a patient-orientated, evidence-based self-help guidebook and patient-centred consultations on disease management and satisfaction in inflammatory bowel disease." Health Technology Assessment 7(28): 140.]

Online Communities of patients have changed only little in the past years. What are the services they need?

Research Approach

Internet survey (three weeks in June 2005)

Questionnaire based on a study of Leimeister, Sidiras and Krcmar

Adapted to the needs of Virtual Communities of Patients based on

Case Studies

Interviews with Operators and Members of Virtual Communities of Patients

Review of the first version of the questionnaire by 12 operators

Internet research led to 117 Virtual Communities of Patients

German speaking context

Selection of active communities, 73 were chosen randomly

12 involved Communities were added to the sample

Demographic Data

295 members and 21 operators (response quote of the operators 23%)

Members are part of 145 (in total) different Virtual Communities of Patients

Top Ten provide 50% of members

rheuma-online.de (rheumatism) 50 11,74%

fibromyalgie-aktuell.de (pain patients) 35 8,22%

dccv.de (morbus crohn / colitis ulcerosa) 31 7,28%

croehnchen-klub.de (morbus crohn / colitis ulcerosa) 24 5,59%

sylvia.at (morbus crohn / colitis ulcerosa) 15 3,50%

diabetes-world.net (diabetes) 14 3,26%

prostatakrebse.de (prostate cancer) 14 3,26%

sd-krebs.de (thyroid cancer) 10 2,33%

leukaemie-betroffene.de (leukemia) 9 2,10%

prostatakrebse.de (prostate cancer) 9 2,10%

> 95% of the study participants are affected by chronic diseases

Summary - Participants 3.00 (sometimes) 3.06 (sometimes) Do you ask questions within the community you won’t ask a physi- cian? (very often 1 – never 5) yes 14 / no 7 yes 136 / no 159 Do you know other members in real life? 2,19 (~daily) 3,12 (~weekly) How often do you write articles within the forum? (several times a day 1 – weekly 3 – never 5) yes 11 / no 10 (6,95) yes 281 / no 14 (9,89) Are you affected by the illness? (years) 4,55 2,22 Member since (years) 40,52 41,68 Average age 10 / 11 208 / 87 Gender f / m Operators Members

Comparison Importance Operators vs. Members 4.0 – highly agree 3.0 – agree 2.0 – neutral 1.0 – disagree 0.0 – highly disagree View of Members View of Operators 12 14 3 23 22 18 13 7 2 1 The feeling to be in a place at home 10 Possibility of discussions about alternative methods of treatment 9 Stability of the website 8 Statements of the community about physicians 7 Statements of the community about medical institutions 6 Push of research within the field of your disease 5 That physicians respect the content and statements of the community 4 Assistance for new members by experienced members 3 That people understand you with your problems 2 Handling member data sensitively 1

Analysis

Explorative factor analysis (varimax orthogonal seven-factor solution using a principal components analysis)

All cronbach-alpha values for each measure of the estimated values show that the reliability of the construct is within an acceptable range.

The total explained variance is 70 percent.

Each item with a factor load less than .50 or loaded on another factor greater than .40 were suppressed.

The structural equation model was estimated by AMOS 5 using a maximum likelihood estimation

The values of the model fit are within an acceptable range (CFI = .847, RMSEA = .038)

All standardized regression coefficients are significant at p < .001 (beside QAC->B p=.003, QAO->B p = .09 and O->B p = .06)

Research Model Members View Structural Equation Model (AMOS 5)

Specific Services for Specific Target Groups 3 1 1 1 2 2 Young 3 1 2 3 1 Old Age 3 2 2 1 1 1 Long Term 3 1 3 2 1 Short Term Time affected 3 1 2 4 Experienced 3 3 2 1 1 Newbie Time mem-bership Perceived Quality Assurance Members Possibility of Interaction PerceivedQuality Assurance Operators Availability of Medical Info PerceivedEase of Use PerceivedBonding Perceived Role of Operator Components of the Model Target Group

The Integration of Offline and Online World

There is no correlation between time membership in the Online Community and Time affected by the disease

How to attract new members?

How to convert visitors into active members?

The Integration Principle Following [Suler 2005] Real Life Virtual Life Virtual Person Real Person Real Behaviour Virtual Behaviour Virtual Identity Real Identity meet tell adopt

Research Method Content Analysis

Do you know other members in real life?

Members: yes 136 / no 159

Operators: yes 14 / no 7

Question: “From where do you know other people of the community in real life?”

Frequency Analysis

Category system based on interviews with experts

Definition of categories based on examples

Analysis of the given answers of the participants (in total 213)

Clustering of the results to the different roles of community members

Communication Channels Gender

Communication Channels Age yes: 74% yes: 39 % Do you know other members in real life? 28% /57% / 15% 30% / 67% / 3% Where do you feel more comfortable? VCHC / the same / SHG yes 62% yes 30% Do you join meetings of self-help groups (SHG)? Older than 55 years Younger than 25 years

Communication Channels Time Affected by Disease yes: 44% yes: 25 % Do you know other members in real life? 41% / 59% / 0% 42% / 58% / 0% Where do you feel more comfortable? VCHC / the same / SHG yes 65% yes 46% Do you join meetings of self-help groups (SHG)? more than 20 years less than 1 year

Communication Channels Time of Membership yes: 37% yes: 32 % Do you know other members in real life? 37% / 55% / 7% 37% / 57% / 6% Where do you feel more comfortable? VCHC / the same / SHG yes 63% yes 44% Do you join meetings of self-help groups (SHG)? Longer than 36 months Less than 6 months

Discussion