Anonymity Versus Privacy: Selective Information Sharing in Online Cancer Communities

• Published in: Journal of medical Internet research Vol. 16; no. 5; p. e126
• Main Authors: Frost, Jeana, Vermeulen, Ivar E, Beekers, Nienke
• Format: Journal Article
• Language: English
• Published: Canada Journal of Medical Internet Research 01.05.2014; Gunther Eysenbach MD MPH, Associate Professor; JMIR Publications Inc; JMIR Publications
• Subjects: Activities of daily living; Analysis of Variance; Anonymity; Cancer; Care and treatment; Clinical information; Community; Computer Security; Computerized medical records; Confidentiality; Cost benefit analysis; Costs; Electronic Health Records; Expected values; Factor analysis; Female; Gender; Health aspects; Health costs; Health information; Health status; Humans; Identity; Information communication; Information Dissemination; Information sharing; Information systems; Interdisciplinary aspects; Internet; Interpersonal Relations; Male; Medical prognosis; Medical records; Medical research; Medicine, Experimental; Middle Aged; Neoplasms; Online health care information services; Original Paper; Patients; Personal health; Personal information; Privacy; Privacy, Right of; Regression Analysis; Safety and security measures; Self-Help Groups - ethics; Situational factors; Social networks; Treatment preferences; User generated content; Virtual communities; Weighing; Women; privacy; anonymity; cancer; online systems; Health 2.0; confidentiality
• ISSN: 1438-8871; 1439-4456; 1438-8871
• DOI: 10.2196/jmir.2684

Active sharing in online cancer communities benefits patients. However, many patients refrain from sharing health information online due to privacy concerns. Existing research on privacy emphasizes data security and confidentiality, largely focusing on electronic medical records. Patient preferences around information sharing in online communities remain poorly understood. Consistent with the privacy calculus perspective adopted from e-commerce research, we suggest that patients approach online information sharing instrumentally, weighing privacy costs against participation benefits when deciding whether to share certain information. Consequently, we argue that patients prefer sharing clinical information over daily life and identity information that potentially compromises anonymity. Furthermore, we explore whether patients' prior experiences, age, health, and gender affect perceived privacy costs and thus willingness to share information. The goal of the present study is to document patient preferences for sharing information within online health platforms. A total of 115 cancer patients reported sharing intentions for 15 different types of information, demographics, health status, prior privacy experiences, expected community utility, and privacy concerns. Factor analysis on the 15 information types revealed 3 factors coinciding with 3 proposed information categories: clinical, daily life, and identity information. A within-subject ANOVA showed a strong preference for sharing clinical information compared to daily life and identity information (F1,114=135.59, P=.001, η(2)=.93). Also, adverse online privacy experiences, age, and health status negatively affected information-sharing intentions. Female patients shared information less willingly. Respondents' information-sharing intentions depend on dispositional and situational factors. Patients share medical details more willingly than daily life or identity information. The results suggest the need to focus on anonymity rather than privacy in online communities.