Published on in Vol 16, No 5 (2014): May

Anonymity Versus Privacy: Selective Information Sharing in Online Cancer Communities

Anonymity Versus Privacy: Selective Information Sharing in Online Cancer Communities

Anonymity Versus Privacy: Selective Information Sharing in Online Cancer Communities

Authors of this article:

Jeana Frost1 ;   Ivar E Vermeulen1 ;   Nienke Beekers2


  1. Kimmerle J, Bientzle M, Cress U. “Scientific evidence is very important for me”: The impact of behavioral intention and the wording of user inquiries on replies and recommendations in a health-related online forum. Computers in Human Behavior 2017;73:320 View
  2. Lange L, Schulz H, Bleich C. E-Health-Angebote in der Onkologie. Der Onkologe 2018;24(5):406 View
  3. Jacobs M, Gheihman G, Gajos K, Gupta A. "I think we know more than our doctors". Proceedings of the ACM on Human-Computer Interaction 2019;3(CSCW):1 View
  4. Hah H. Health Consumers’ Daily Habit of Internet Banking Use as a Proxy for Understanding Health Information Sharing Behavior: Quasi-Experimental Approach. Journal of Medical Internet Research 2020;22(1):e15585 View
  5. Pezaro S, Clyne W, Gerada C. Confidentiality, anonymity and amnesty for midwives in distress seeking online support – Ethical?. Nursing Ethics 2018;25(4):481 View
  6. Li J. A Privacy Preservation Model for Health-Related Social Networking Sites. Journal of Medical Internet Research 2015;17(7):e168 View
  7. Peng W, Occa A, McFarlane S, Morgan S. A Content Analysis of the Discussions about Clinical Trials on A Cancer-dedicated Online Forum. Journal of Health Communication 2019;24(12):912 View
  8. Kimmerle J, Bientzle M, Cress U. Personal Experiences and Emotionality in Health-Related Knowledge Exchange in Internet Forums: A Randomized Controlled Field Experiment Comparing Responses to Facts Vs Personal Experiences. Journal of Medical Internet Research 2014;16(12):e277 View
  9. Niimi Y, Ota K. Examination of an Electronic Patient Record Display Method to Protect Patient Information Privacy. CIN: Computers, Informatics, Nursing 2017;35(2):100 View
  10. Matza L, Paulus T, Garris C, Van de Velde N, Chounta V, Deger K. Qualitative Thematic Analysis of Social Media Data to Assess Perceptions of Route of Administration for Antiretroviral Treatment among People Living with HIV. The Patient - Patient-Centered Outcomes Research 2020;13(4):409 View
  11. Chen X, Fann Y, McAuliffe M, Vismer D, Yang R. Checking Questionable Entry of Personally Identifiable Information Encrypted by One-Way Hash Transformation. JMIR Medical Informatics 2017;5(1):e2 View
  12. Chou W, Moskowitz M. Social media use in adolescent and young adult (AYA) cancer survivors. Current Opinion in Psychology 2016;9:88 View
  13. Myneni S, Cobb N, Cohen T. In Pursuit of Theoretical Ground in Behavior Change Support Systems: Analysis of Peer-to-Peer Communication in a Health-Related Online Community. Journal of Medical Internet Research 2016;18(2):e28 View
  14. El Morr C, Layal M. Effectiveness of ICT-based intimate partner violence interventions: a systematic review. BMC Public Health 2020;20(1) View
  15. Petersen C. User-focused data sharing agreements: a foundation for the genomic future. JAMIA Open 2019;2(4):402 View
  16. Zhu P, Shen J, Xu M. Patients’ Willingness to Share Information in Online Patient Communities: Questionnaire Study. Journal of Medical Internet Research 2020;22(4):e16546 View
  17. Wicks P, Mack Thorley E, Simacek K, Curran C, Emmas C. Scaling PatientsLikeMe via a “Generalized Platform” for Members with Chronic Illness: Web-Based Survey Study of Benefits Arising. Journal of Medical Internet Research 2018;20(5):e175 View
  18. Kumi R, Sabherwal R. Knowledge sharing behavior in online discussion communities: Examining behavior motivation from social and individual perspectives. Knowledge and Process Management 2019;26(2):110 View
  19. Robinson S. Factors predicting attitude toward disclosing personal data online. Journal of Organizational Computing and Electronic Commerce 2018;28(3):214 View
  20. Hartzler A, Taylor M, Park A, Griffiths T, Backonja U, McDonald D, Wahbeh S, Brown C, Pratt W. Leveraging cues from person-generated health data for peer matching in online communities. Journal of the American Medical Informatics Association 2016;23(3):496 View
  21. van Eenbergen M, van de Poll-Franse L, Heine P, Mols F. The Impact of Participation in Online Cancer Communities on Patient Reported Outcomes: Systematic Review. JMIR Cancer 2017;3(2):e15 View
  22. Ippolito A, Smaldone F, Ruberto M. Exploring patient empowerment. The TQM Journal 2019;32(1):92 View
  23. Grunberg P, Dennis C, Da Costa D, Zelkowitz P. Infertility patients' need and preferences for online peer support. Reproductive Biomedicine & Society Online 2018;6:80 View
  24. Matsuda S, Aoki K, Tomizawa S, Sone M, Tanaka R, Kuriki H, Takahashi Y. Analysis of Patient Narratives in Disease Blogs on the Internet: An Exploratory Study of Social Pharmacovigilance. JMIR Public Health and Surveillance 2017;3(1):e10 View
  25. El Morr C, Maule C, Ashfaq I, Ritvo P, Ahmad F. Design of a Mindfulness Virtual Community: A focus-group analysis. Health Informatics Journal 2020;26(3):1560 View
  26. Ihrig A, Renner T, Muck T, Maatz P, Borkowetz A, Keck B, Maatouk I, Wirth M, Huber J. Online support groups offer low-threshold backing for family and friends of patients with prostate cancer. European Journal of Cancer Care 2019;28(2):e12982 View
  27. Badreddine B, Blount Y. Understanding influential factors behind lurking behaviour in online cancer communities. Behaviour & Information Technology 2021;40(6):542 View
  28. Bussone A, Kasadha B, Stumpf S, Durrant A, Tariq S, Gibbs J, Lloyd K, Bird J. Trust, Identity, Privacy, and Security Considerations for Designing a Peer Data Sharing Platform Between People Living With HIV. Proceedings of the ACM on Human-Computer Interaction 2020;4(CSCW2):1 View
  29. Hanghøj S, Boisen K, Hjerming M, Pappot H. Adolescents’ and young adults’ experiences of a prototype cancer smartphone app. DIGITAL HEALTH 2021;7:205520762199725 View
  30. Karim J, Talhouk A. Person-Generated Health Data in Women’s Health: Protocol for a Scoping Review. JMIR Research Protocols 2021;10(5):e26110 View
  31. Park M, Suh E, Yu S. Uncertainty and Nursing Needs of Parents with Pediatric Cancer Patients in Different Treatment Phases: A Cross-Sectional Study. International Journal of Environmental Research and Public Health 2021;18(8):4253 View
  32. Matsuda S, Ohtomo T, Tomizawa S, Miyano Y, Mogi M, Kuriki H, Nakayama T, Watanabe S. Incorporating Unstructured Patient Narratives and Health Insurance Claims Data in Pharmacovigilance: Natural Language Processing Analysis of Patient-Generated Texts About Systemic Lupus Erythematosus. JMIR Public Health and Surveillance 2021;7(6):e29238 View
  33. Cerón-Guzmán J, Tetteroo D, Hu J, Markopoulos P. “Not Sure Sharing Does Anything Extra for Me”: Understanding How People with Cardiovascular Disease Conceptualize Sharing Personal Health Data with Peers. International Journal of Environmental Research and Public Health 2022;19(15):9508 View
  34. Liu B, Miltgen C, Xia H. Disclosure decisions and the moderating effects of privacy feedback and choice. Decision Support Systems 2022;155:113717 View
  35. Popovac M, Roomaney R. Measuring online health‐seeking behaviour: Construction and initial validation of a new scale. British Journal of Health Psychology 2022;27(3):756 View
  36. He Y, Guo X, Wu T, Vogel D. The effect of interactive factors on online health consultation review deviation: An empirical investigation. International Journal of Medical Informatics 2022;163:104781 View
  37. Khazaal Y, Chatton A, Rochat L, Hede V, Viswasam K, Penzenstadler L, Berle D, Starcevic V. Compulsive Health-Related Internet Use and Cyberchondria. European Addiction Research 2021;27(1):58 View
  38. Rubya S, Yarosh S. Interpretations of Online Anonymity in Alcoholics Anonymous and Narcotics Anonymous. Proceedings of the ACM on Human-Computer Interaction 2017;1(CSCW):1 View
  39. Wang X, Zuo Z, Tong X, Zhu Y. Talk more about yourself: a data-driven extended theory of reasoned action for online health communities. Information Technology and Management 2022 View
  40. Kelly K, Doucet S, Luke A, Azar R, Montelpare W. Exploring the Use of a Facebook-Based Support Group for Caregivers of Children and Youth With Complex Care Needs: Qualitative Descriptive Study. JMIR Pediatrics and Parenting 2022;5(2):e33170 View
  41. Yao Z, Zhang B, Ni Z, Ma F. What users seek and share in online diabetes communities: examining similarities and differences in expressions and themes. Aslib Journal of Information Management 2022;74(2):311 View
  42. Le L, Hoang P, Pham H. Sharing health information across online platforms: A systematic review. Health Communication 2023;38(8):1550 View
  43. Ang W, Chew H, Ong Y, Zheng Z, Shorey S, Lau Y. Becoming More Resilient during COVID-19: Insights from a Process Evaluation of Digital Resilience Training. International Journal of Environmental Research and Public Health 2022;19(19):12899 View
  44. Banwell E, Hanley T, De Ossorno Garcia S, Mindel C, Kayll T, Sefi A. The Helpfulness of Web-Based Mental Health and Well-being Forums for Providing Peer Support for Young People: Cross-sectional Exploration. JMIR Formative Research 2022;6(9):e36432 View
  45. Ashtari S, Taylor A. Patients With Rare Diseases and the Power of Online Support Groups: Implications for the Medical Community. JMIR Formative Research 2023;7:e41610 View
  46. Pelletier K, Zimmerli V. Cancer Types: Their Social Media Coverage, Incidence and Distortion in French-Speaking Countries of the West*. Health & New Media Research 2021;5(2):190 View
  47. Benevento M, Mandarelli G, Carravetta F, Ferorelli D, Caterino C, Nicolì S, Massari A, Solarino B. Measuring the willingness to share personal health information: a systematic review. Frontiers in Public Health 2023;11 View
  48. Park E, Kim J, Park Y, Chun K. Facilitating and impeding factors to insiders’ prosocial rule breaking in South Korea. Computers & Security 2024;136:103572 View
  49. Beauchamp J, Wang M, Leon Novelo L, Cox C, Meyer T, Fagundes C, Savitz S, Sharrief A, Dishman D, Johnson C. Feasibility and user-experience of a virtual environment for social connection and education after stroke: A pilot study. Journal of Stroke and Cerebrovascular Diseases 2024;33(2):107515 View
  50. Baines R, Stevens S, Austin D, Anil K, Bradwell H, Cooper L, Maramba I, Chatterjee A, Leigh S. Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review. Journal of Medical Internet Research 2024;26:e50421 View
  51. Straand I, Baxter K, Følstad A. Remote Inclusion of Vulnerable Users in mHealth Intervention Design: Retrospective Case Analysis. JMIR mHealth and uHealth 2024;12:e55548 View
  52. Revenäs Å, Opava C, Ahlén H, Brusewitz M, Pettersson S, Åsenlöf P. Mobile internet service for self-management of physical activity in people with rheumatoid arthritis: evaluation of a test version. RMD Open 2016;2(1):e000214 View
  53. Lindberg J, Lundgren A. Peer-to-peer sharing in public health interventions: strategies when people share health-related personal information on social media. International Journal of Qualitative Studies on Health and Well-being 2024;19(1) View

Books/Policy Documents

  1. Xu R, Zhou J, Zhang Q, Hendler J. Encyclopedia of Social Network Analysis and Mining. View
  2. Xu R, Zhou J, Zhang Q, Hendler J. Encyclopedia of Social Network Analysis and Mining. View
  3. Issa T, Isaias P. Sustainable Design. View
  4. Zhao W, Guo X, Wu T, Geng J. Smart Health. View
  5. Gershoff A, Mukherjee A. The Cambridge Handbook of Consumer Psychology. View
  6. Yip J. Discourse of Online Social Support. View