This paper is in the following e-collection/theme issue:

Ethics, Privacy, and Legal Issues (456) Medicine 2.0: Social Media, Open, Participatory, Collaborative Medicine (1552)

Published on in Vol 15, No 6 (2013): June

The Conceptual and Practical Ethical Dilemmas of Using Health Discussion Board Posts as Research Data

The Conceptual and Practical Ethical Dilemmas of Using Health Discussion Board Posts as Research Data

The Conceptual and Practical Ethical Dilemmas of Using Health Discussion Board Posts as Research Data

Authors of this article:

Carol S Bond1 ;   Osman Hassan Ahmed1 ;   Martin Hind1 ;   Bronwen Thomas2 ;   Jaqui Hewitt-Taylor1
Article Authors Cited by (46) Tweetations (51) Metrics

Journals

  1. Hu Y, Wang R, Chen F. Bi-submodular Optimization (BSMO) for Detecting Drug-Drug Interactions (DDIs) from On-line Health Forums. Journal of Healthcare Informatics Research 2019;3(1):19 View
  2. ASLAN A, KÜÇÜKVARDAR M. Dijital Hastalıkların Tespitinde Etik Bir Model Önerisi. AJIT-e: Online Academic Journal of Information Technology 2020;10(39) View
  3. Feinkohl I, Flemming D, Cress U, Kimmerle J. The Impact of Personality Factors and Preceding User Comments on the Processing of Research Findings on Deep Brain Stimulation: A Randomized Controlled Experiment in a Simulated Online Forum. Journal of Medical Internet Research 2016;18(3):e59 View
  4. Smedley R, Coulson N. A practical guide to analysing online support forums. Qualitative Research in Psychology 2021;18(1):76 View
  5. Golder S, Ahmed S, Norman G, Booth A. Attitudes Toward the Ethics of Research Using Social Media: A Systematic Review. Journal of Medical Internet Research 2017;19(6):e195 View
  6. Smedley R, Coulson N. Genetic testing for Huntington’s disease: A thematic analysis of online support community messages. Journal of Health Psychology 2021;26(4):580 View
  7. Kendal S, Kirk S, Elvey R, Catchpole R, Pryjmachuk S. How a moderated online discussion forum facilitates support for young people with eating disorders. Health Expectations 2017;20(1):98 View
  8. Bender J, Cyr A, Arbuckle L, Ferris L. Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment. Journal of Medical Internet Research 2017;19(4):e104 View
  9. Shaw E. The use of online discussion forums and communities for health research. Family Practice 2020;37(4):574 View
  10. Brady E, Segar J, Sanders C. “I Always Vet Things”: Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions. Journal of Medical Internet Research 2016;18(10):e274 View
  11. Denecke K. An ethical assessment model for digital disease detection technologies. Life Sciences, Society and Policy 2017;13(1) View
  12. Kuchinskaya O, Parker L. ‘Recurrent losers unite’: Online forums, evidence-based activism, and pregnancy loss. Social Science & Medicine 2018;216:74 View
  13. Boothroyd D, Lewis S. Online Drug Scenes and Harm Reduction From Below as Phronesis. Contemporary Drug Problems 2016;43(3):293 View
  14. Koschack J, Weibezahl L, Friede T, Himmel W, Makedonski P, Grabowski J. Scientific Versus Experiential Evidence: Discourse Analysis of the Chronic Cerebrospinal Venous Insufficiency Debate in a Multiple Sclerosis Forum. Journal of Medical Internet Research 2015;17(7):e159 View
  15. Samuel G, Ahmed W, Kara H, Jessop C, Quinton S, Sanger S. Is It Time to Re-Evaluate the Ethics Governance of Social Media Research?. Journal of Empirical Research on Human Research Ethics 2018;13(4):452 View
  16. Dillon K, Seacat J, Saucier C, Doyle-Campbell C. Could Blood Pressure Phobia Go Beyond the White Coat Effect?. American Journal of Hypertension 2015;28(11):1306 View
  17. Gutierrez A. Challenging ideological environments: international teachers’ experiences in an outside-of-country teacher training programme. Critical Studies in Education 2016;57(3):313 View
  18. Gezgin U. An invitation to critical social science of big data: from critical theory and critical research to omniresistance. AI & SOCIETY 2020;35(1):187 View
  19. Roberts L. Ethical Issues in Conducting Qualitative Research in Online Communities. Qualitative Research in Psychology 2015;12(3):314 View
  20. Eggleston E, Weitzman E. Innovative Uses of Electronic Health Records and Social Media for Public Health Surveillance. Current Diabetes Reports 2014;14(3) View
  21. Syred J, Naidoo C, Woodhall S, Baraitser P. Would You Tell Everyone This? Facebook Conversations as Health Promotion Interventions. Journal of Medical Internet Research 2014;16(4):e108 View
  22. da Costa M, Lima Leite F. Factors influencing research data communication on Zika virus: a grounded theory. Journal of Documentation 2019;75(5):910 View
  23. Carter A, Liddle J, Hall W, Chenery H. Mobile Phones in Research and Treatment: Ethical Guidelines and Future Directions. JMIR mHealth and uHealth 2015;3(4):e95 View
  24. Ford E, Shepherd S, Jones K, Hassan L. Toward an Ethical Framework for the Text Mining of Social Media for Health Research: A Systematic Review. Frontiers in Digital Health 2021;2 View
  25. Defossez E. No Magic Pills: A Burkean View on the Ambiguity of Mild Depression. Rhetoric Review 2020;39(3):330 View
  26. Lathan H, Kwan A, Takats C, Tanner J, Wormer R, Romero D, Jones H. Ethical considerations and methodological uses of Facebook data in public health research: A systematic review. Social Science & Medicine 2023;322:115807 View
  27. Beirakdar S, Klingborg L, Herzig van Wees S. Attitudes of Swedish Language Twitter Users Toward COVID-19 Vaccination: Exploratory Qualitative Study. JMIR Infodemiology 2023;3:e42357 View
  28. Cino D. Studying online interpersonal communication using online forums: epistemological, ethical, and methodological perspectives. SOCIOLOGIA E RICERCA SOCIALE 2022;(127):62 View
  29. Thabrew H, Aljawahiri N, Kumar H, Bowden N, Milne B, Prictor M, Jordan V, Breedvelt J, Shepherd T, Hetrick S. ‘As Long as It's Used for Beneficial Things’: An Investigation of non-Māori, Māori and Young People's Perceptions Regarding the Research use of the Aotearoa New Zealand Integrated Data Infrastructure (IDI). Journal of Empirical Research on Human Research Ethics 2022;17(4):471 View
  30. He Y, Sun Y. Breaking up with my idol: A qualitative study of the psychological adaptation process of renouncing fanship. Frontiers in Psychology 2022;13 View
  31. Sanger S, Duffin S, Gough R, Bath P. Use of Online Health Forums by People Living With Breast Cancer During the COVID-19 Pandemic: Thematic Analysis. JMIR Cancer 2023;9:e42783 View
  32. Moon M. Digitally Mediated Mobilization in South Korea: Women’s March and Collective Identity Building Online. Sociological Perspectives 2022;65(5):960 View
  33. Burke J, Dunne P. Lifestyle medicine pillars as predictors of psychological flourishing. Frontiers in Psychology 2022;13 View
  34. Karampatakis G, Wood H, Griffiths C, Lea N, Ashcroft R, Day B, Walker N, Coulson N, De Simoni A. Ethical and Information Governance Considerations for Promoting Digital Social Interventions in Primary Care. Journal of Medical Internet Research 2023;25:e44886 View
  35. 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
  36. Cimiano P, Collins B, De Vuono M, Escudier T, Gottowik J, Hartung M, Leddin M, Neupane B, Rodriguez-Esteban R, Schmidt A, Starke-Knäusel C, Voorhaar M, Wieckowski K. Patient listening on social media for patient-focused drug development: a synthesis of considerations from patients, industry and regulators. Frontiers in Medicine 2024;11 View
  37. Cox L, Gibbs N, Turnock L. “Emerging anabolic androgenic steroid markets; the prominence of social media”. Drugs: Education, Prevention and Policy 2024;31(2):257 View
  38. Zhang Y, Fu J, Lai J, Deng S, Guo Z, Zhong C, Tang J, Cao W, Wu Y. Reporting of Ethical Considerations in Qualitative Research Utilizing Social Media Data on Public Health Care: Scoping Review. Journal of Medical Internet Research 2024;26:e51496 View

Books/Policy Documents

  1. Kuyumdzhieva A. Ethics and Integrity in Health and Life Sciences Research. View
  2. Valdez R, Keim-Malpass J. Social Web and Health Research. View
  3. Thomas B. Style and Reader Response. View
  4. Denecke K. Health Web Science. View
  5. Bond C, Merolli M, Ahmed O. Participatory Health Through Social Media. View
  6. Kopp C, Layton R, Gondal I, Sillitoe J. Automating Open Source Intelligence. View
  7. Berning M, Hardon A. Researching Risk and Uncertainty. View
  8. Gibbs N, Hall A. Researching Cybercrimes. View