Praesentation C&T2007 070624 03 Ule

Slide 1: 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

Slide 2: Outline Motivation – Relevance of our work Research Model - Results Discussion © Dannecker and Lechner 2

Slide 3: 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? © Dannecker and Lechner 3

Slide 4: 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  © Dannecker and Lechner 4

Slide 5: 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% 1. fibromyalgie-aktuell.de (pain patients) 35 8,22% 2. dccv.de (morbus crohn / colitis ulcerosa) 31 7,28% 3. croehnchen-klub.de (morbus crohn / colitis ulcerosa) 24 5,59% 4. sylvia.at (morbus crohn / colitis ulcerosa) 15 3,50% 5. diabetes-world.net (diabetes) 14 3,26% 6. prostatakrebse.de (prostate cancer) 14 3,26% 7. sd-krebs.de (thyroid cancer) 10 2,33% 8. leukaemie-betroffene.de (leukemia) 9 2,10% 9. prostatakrebse.de (prostate cancer) 9 2,10% 10. > 95% of the study participants are affected by chronic diseases  © Dannecker and Lechner 5

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

Slide 7: Comparison Importance Operators vs. Members 0,0 1,0 2,0 3,0 4,0 1 1 Handling member data sensitively 2 2 That people understand you with your problems 3 7 Assistance for new members by experienced members 4 13 That physicians respect the content and statements of the community Operators Members 5 18 Push of research within the field of your disease 6 22 Statements of the community about medical institutions 7 23 Statements of the community about physicians 8 3 Stability of the website 9 14 Possibility of discussions about alternative methods of treatment 10 12 The feeling to be in a place at home 4.0 – highly agree 3.0 – agree View of Operators 2.0 – neutral View of Members 1.0 – disagree 0.0 – highly disagree © Dannecker and Lechner 7

Slide 8: 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) © Dannecker and Lechner 8

Slide 9: Research Model Members View .33 Ease of Use Possibility of EoU Interaction PoI .34 .36 Perceived Role of Operator .44 PRoO -.24 .48 Perceived Bonding Perceived PB .26 Quality Assurance Operator PQAO .50 .24 Perceived Availability of Quality Assurance Medical Information Community .41 AoMI PQAC Structural Equation Model (AMOS 5) © Dannecker and Lechner 9

Slide 10: Specific Services for Specific Target Groups Components of the Model Perceived Perceived Perceived Availability Perceived Possibility Perceived Target Group Role of Bonding Ease of Medical Quality of Quality Operator of Info Assurance Interaction Assurance Use Operators Members Young 2 2 1 1 1 3 Age Old 1 3 2 1 3 Time Newbie 1 1 2 3 3 mem- Experienced 4 2 1 3 bership Short Term 1 2 3 1 3 Time affected Long Term 1 1 1 2 2 3 © Dannecker and Lechner 10

Slide 11: 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?  © Dannecker and Lechner 11

Slide 12: The Integration Principle Real Life Real Real Real Person Identity Behaviour meet tell adopt Virtual Virtual Virtual Person Identity Behaviour Virtual Life Following [Suler 2005] © Dannecker and Lechner 12

Slide 13: 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  © Dannecker and Lechner 13

Slide 14: 0% 10% 20% 30% 40% © Dannecker and Lechner Self-help Group Clinic Patient meeting Gender Meeting of forum Phone/E-Mail Communication Channels Private meeting Lecture/Congress Physician Men Organisational Women meeting of VCHC Misc (e.g. by fortune) 14

Slide 15: Communication Channels Age 40% <= 25 years 30% > 55 years 20% 10% 0% Private meeting Meeting of forum meeting of VCHC Self-help Group Patient meeting Physician Phone/E-Mail Lecture/Congress Misc (e.g. by Clinic Organisational fortune) Younger than 25 years Older than 55 years Do you join meetings of self-help groups (SHG)? yes 30% yes 62% Where do you feel more comfortable? 30% / 67% / 3% 28% /57% / 15% VCHC / the same / SHG Do you know other members in real life? yes: 39 % yes: 74% © Dannecker and Lechner 15

Slide 16: Communication Channels Time Affected by Disease 40% <= 1 year 30% > 20 years 20% 10% 0% Private meeting Meeting of forum meeting of VCHC Self-help Group Physician Patient meeting Phone/E-Mail Lecture/Congress Misc (e.g. by Clinic Organisational fortune) less than 1 year more than 20 years Do you join meetings of self-help groups (SHG)? yes 46% yes 65% Where do you feel more comfortable? 42% / 58% / 0% 41% / 59% / 0% VCHC / the same / SHG Do you know other members in real life? yes: 25 % yes: 44% © Dannecker and Lechner 16

Slide 17: Communication Channels Time of Membership 40% <= 6 months 30% > 36 months 20% 10% 0% meeting of VCHC Meeting of forum Phone/E-Mail Misc (e.g. by Patient meeting Private meeting Lecture/Congress Self-help Group Clinic Physician Organisational fortune) Less than 6 months Longer than 36 months Do you join meetings of self-help groups (SHG)? yes 44% yes 63% Where do you feel more comfortable? 37% / 57% / 6% 37% / 55% / 7% VCHC / the same / SHG Do you know other members in real life? yes: 32 % yes: 37% © Dannecker and Lechner 17

Slide 18: Discussion Integration of Offline and Online world is important and relevant  Communities eventually benefit from  Skilled managers / operators  Target group specific services  New Services Quality management of contents  Events  Interaction  Location based services  Holístic approach to community management  © Dannecker and Lechner 18