Published on in Vol 19, No 4 (2017): April

This is a member publication of Centre for Global eHealth Innovation, Toronto, ON, Canada

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

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

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

Journals

  1. Beier M, Früh S. Nutzung von Social Media Plattformen durch Schweizer Spitäler - Eigene Accounts, Nutzungsintensitäten und Reichweiten (Swiss Hospitals on Social Media Platforms: Own Accounts, Communication Frequencies and Reach). SSRN Electronic Journal 2018 View
  2. Beier M, Früh S. Swiss Hospitals on Social Media Platforms: Own Accounts, Communication Frequencies and Reach. SSRN Electronic Journal 2019 View
  3. Balasubramanian A, Thirumavalavan N, Srivatsav A, Yu J, Lipshultz L, Pastuszak A. Testosterone Imposters: An Analysis of Popular Online Testosterone Boosting Supplements. The Journal of Sexual Medicine 2019;16(2):203 View
  4. Musker M, Short C, Licinio J, Wong M, Bidargaddi N. Using behaviour change theory to inform an innovative digital recruitment strategy in a mental health research setting. Journal of Psychiatric Research 2020;120:1 View
  5. Watson J. Social Media Use in Cancer Care. Seminars in Oncology Nursing 2018;34(2):126 View
  6. Benedict C, Hahn A, Diefenbach M, Ford J. Recruitment via social media: advantages and potential biases. DIGITAL HEALTH 2019;5:205520761986722 View
  7. Hokke S, Hackworth N, Quin N, Bennetts S, Win H, Nicholson J, Zion L, Lucke J, Keyzer P, Crawford S, Jan Y. Ethical issues in using the internet to engage participants in family and child research: A scoping review. PLOS ONE 2018;13(9):e0204572 View
  8. Stephenson N, Hetherington E, Dodd S, Mathews A, Tough S. Mitigation of Participant Loss to Follow-Up Using Facebook: All Our Families Longitudinal Pregnancy Cohort. Journal of Medical Internet Research 2019;21(2):e10441 View
  9. Reuter K, Angyan P, Le N, MacLennan A, Cole S, Bluthenthal R, Lane C, El-Khoueiry A, Buchanan T. Monitoring Twitter Conversations for Targeted Recruitment in Cancer Trials in Los Angeles County: Protocol for a Mixed-Methods Pilot Study. JMIR Research Protocols 2018;7(9):e177 View
  10. Divall B, Spiby H. Online forums for data collection: ethical challenges from a study exploring women’s views of birth plans. Nurse Researcher 2019;27(2):26 View
  11. Stens O, Weisman M, Simard J, Reuter K. Insights From Twitter Conversations on Lupus and Reproductive Health: Protocol for a Content Analysis. JMIR Research Protocols 2020;9(8):e15623 View
  12. Reuter K, MacLennan A, Le N, Unger J, Kaiser E, Angyan P. A Software Tool Aimed at Automating the Generation, Distribution, and Assessment of Social Media Messages for Health Promotion and Education Research. JMIR Public Health and Surveillance 2019;5(2):e11263 View
  13. Katz M, Anderson P, Thompson M, Salmi L, Freeman-Daily J, Utengen A, Dizon D, Blotner C, Cooke D, Sparacio D, Staley A, Fisch M, Young C, Attai D. Organizing Online Health Content: Developing Hashtag Collections for Healthier Internet-Based People and Communities. JCO Clinical Cancer Informatics 2019;(3):1 View
  14. Bunyan A, Venuturupalli S, Reuter K. Expressed Symptoms and Attitudes Toward Using Twitter for Health Care Engagement Among Patients With Lupus on Social Media: Protocol for a Mixed Methods Study. JMIR Research Protocols 2021;10(5):e15716 View
  15. Gaia J, Wang X, Yoo C, Sanders G. Good News and Bad News About Incentives to Violate the Health Insurance Portability and Accountability Act (HIPAA): Scenario-Based Questionnaire Study. JMIR Medical Informatics 2020;8(7):e15880 View
  16. Min K, Song S, Min J. Topic Modeling of Social Networking Service Data on Occupational Accidents in Korea: Latent Dirichlet Allocation Analysis. Journal of Medical Internet Research 2020;22(8):e19222 View
  17. Macapagal K, Li D, Clifford A, Madkins K, Mustanski B. The CAN-DO-IT Model: a Process for Developing and Refining Online Recruitment in HIV/AIDS and Sexual Health Research. Current HIV/AIDS Reports 2020;17(3):190 View
  18. Robles T, Bordel B, Alcarria R, Sánchez-de-Rivera D. Enabling trustworthy personal data protection in eHealth and well-being services through privacy-by-design. International Journal of Distributed Sensor Networks 2020;16(5):155014772091211 View
  19. Reuter K, Danve A, Deodhar A. Harnessing the power of social media: how can it help in axial spondyloarthritis research?. Current Opinion in Rheumatology 2019;31(4):321 View
  20. Hochheiser H, Valdez R. Human-Computer Interaction, Ethics, and Biomedical Informatics. Yearbook of Medical Informatics 2020;29(01):093 View
  21. Verbrugge J, Rumbaugh M, Cook L, Schulze J, Miller M, Heathers L, Arnedo V, Kuhl M, Foroud T. The Promise and Pitfalls of Facebook Advertising: a Genetic Counselor’s Perspective. Journal of Genetic Counseling 2018;27(2):326 View
  22. Bay M. Social Media Ethics. ACM Transactions on Social Computing 2018;1(4):1 View
  23. Dol J, Tutelman P, Chambers C, Barwick M, Drake E, Parker J, Parker R, Benchimol E, George R, Witteman H. Health Researchers’ Use of Social Media: Scoping Review. Journal of Medical Internet Research 2019;21(11):e13687 View
  24. Loeb S, Katz M, Langford A, Byrne N, Ciprut S. Prostate cancer and social media. Nature Reviews Urology 2018;15(7):422 View
  25. Hokke S, Hackworth N, Bennetts S, Nicholson J, Keyzer P, Lucke J, Zion L, Crawford S. Ethical Considerations in Using Social Media to Engage Research Participants: Perspectives of Australian Researchers and Ethics Committee Members. Journal of Empirical Research on Human Research Ethics 2020;15(1-2):12 View
  26. Jerome R, Dunkel L, Kennedy N, Olson E, Pulley J, Bernard G, Wilkins C, Harris P. To end disease tomorrow, begin with trials today: Digital strategies for increased awareness of a clinical trials finder. Journal of Clinical and Translational Science 2019;3(4):190 View
  27. Gossec L, Kedra J, Servy H, Pandit A, Stones S, Berenbaum F, Finckh A, Baraliakos X, Stamm T, Gomez-Cabrero D, Pristipino C, Choquet R, Burmester G, Radstake T. EULAR points to consider for the use of big data in rheumatic and musculoskeletal diseases. Annals of the Rheumatic Diseases 2020;79(1):69 View
  28. Sedrak M, Attai D, George K, Katz M, Markham M. Integrating Social Media in Modern Oncology Practice and Research. American Society of Clinical Oncology Educational Book 2018;(38):894 View
  29. Balasubramanian A, Thirumavalavan N, Srivatsav A, Yu J, Hotaling J, Lipshultz L, Pastuszak A. An Analysis of Popular Online Erectile Dysfunction Supplements. The Journal of Sexual Medicine 2019;16(6):843 View
  30. Wiederhold B. Has the Internet Killed Privacy, or Has Our Definition Simply Changed?. Cyberpsychology, Behavior, and Social Networking 2018;21(7):403 View
  31. Akers L, Gordon J. Using Facebook for Large-Scale Online Randomized Clinical Trial Recruitment: Effective Advertising Strategies. Journal of Medical Internet Research 2018;20(11):e290 View
  32. Lauckner C, Desrosiers A, Muilenburg J, Killanin A, Genter E, Kershaw T. Social media photos of substance use and their relationship to attitudes and behaviors among ethnic and racial minority emerging adult men living in low-income areas. Journal of Adolescence 2019;77:152 View
  33. Tseng H, Hung W, Hwang H, Chang I. Do Patients’ Privacy Concerns Influence Their Intention toward Medical Image Exchange Consent in Taiwan?. Healthcare 2020;8(1):14 View
  34. Böhmová L, Chudán D. Analyzing Social Media Data for Recruiting Purposes. Acta Informatica Pragensia 2018;7(1):4 View
  35. Rendina H, Mustanski B. Privacy, Trust, and Data Sharing in Web-Based and Mobile Research: Participant Perspectives in a Large Nationwide Sample of Men Who Have Sex With Men in the United States. Journal of Medical Internet Research 2018;20(7):e233 View
  36. Reuter K, Zhu Y, Angyan P, Le N, Merchant A, Zimmer M. Public Concern About Monitoring Twitter Users and Their Conversations to Recruit for Clinical Trials: Survey Study. Journal of Medical Internet Research 2019;21(10):e15455 View
  37. Bragard E, Fisher C, Curtis B. “They know what they are getting into:” Researchers confront the benefits and challenges of online recruitment for HIV research. Ethics & Behavior 2020;30(7):481 View
  38. Pratap A, Allred R, Duffy J, Rivera D, Lee H, Renn B, Areán P. Contemporary Views of Research Participant Willingness to Participate and Share Digital Data in Biomedical Research. JAMA Network Open 2019;2(11):e1915717 View
  39. Tan K, Killela M, Leckey J. Ethical Considerations of Social Media to Recruit Caregivers of Children With Cancer. Nursing Research 2021;70(1):67 View
  40. Bernier A, Taylor I. Rare disease data stewardship in Canada. FACETS 2020;5(1):836 View
  41. Nittas V, Puhan M, von Wyl V. Toward a Working Definition of eCohort Studies in Health Research: Narrative Literature Review. JMIR Public Health and Surveillance 2021;7(1):e24588 View
  42. Hirschprung R, Tayro S, Reznik E. Optimising technological literacy acquirement to protect privacy and security. Behaviour & Information Technology 2020:1 View
  43. Pritchard E. Using Facebook to Recruit People with Dwarfism: Pros and Pitfalls for Disabled Participants and Researchers. Scandinavian Journal of Disability Research 2021;23(1):85 View
  44. Farsi D. Social Media and Health Care, Part I: Literature Review of Social Media Use by Health Care Providers. Journal of Medical Internet Research 2021;23(4):e23205 View
  45. Stanger C, Kowatsch T, Xie H, Nahum-Shani I, Lim-Liberty F, Anderson M, Santhanam P, Kaden S, Rosenberg B. A Digital Health Intervention (SweetGoals) for Young Adults With Type 1 Diabetes: Protocol for a Factorial Randomized Trial. JMIR Research Protocols 2021;10(2):e27109 View
  46. Abshire D, McDonnell K, Donevant S, Corbett C, Tavakoli A, Felder T, Pinto B. Pivoting Nursing Research and Scholarship During the COVID-19 Pandemic. Nursing Research 2021;70(3):165 View

Books/Policy Documents

  1. Valdez R, Keim-Malpass J. Social Web and Health Research. View
  2. Kvalnes Ø. Moral Reasoning at Work. View
  3. Bohmova L, Pavlicek A, Doucek P. Information Systems: Research, Development, Applications, Education. View
  4. Kvalnes Ø. Digital Dilemmas. View
  5. Bendi M. When Translation Goes Digital. View