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

Ethics, Privacy, and Legal Issues (485) Big Data (241) Electronic Health Records (1065) Secondary Use of Clinical Data for Research and Surveillance (373)
Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study

Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study

Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study

Authors of this article:

Karen Spencer1 Author Orcid Image ;   Caroline Sanders2 Author Orcid Image ;   Edgar A Whitley3 Author Orcid Image ;   David Lund4 Author Orcid Image ;   Jane Kaye5 Author Orcid Image ;   William Gregory Dixon1, 6, 7 Author Orcid Image
Article Authors Cited by (124) Tweetations (55) Metrics

Journals

  1. Canaway R, Boyle D, Manski‐Nankervis J, Bell J, Hocking J, Clarke K, Clark M, Gunn J, Emery J. Gathering data for decisions: best practice use of primary care electronic records for research. Medical Journal of Australia 2019;210(S6) View
  2. Franklin E, Nichols H, House L, Buzaglo J, Thiboldeaux K. Cancer Patient Perspectives on Sharing of Medical Records and Mobile Device Data for Research Purposes. Journal of Patient Experience 2020;7(6):1115 View
  3. Andrews S, Raspa M, Edwards A, Moultrie R, Turner-Brown L, Wagner L, Alvarez Rivas A, Frisch M, Wheeler A. “Just tell me what’s going on”: The views of parents of children with genetic conditions regarding the research use of their child’s electronic health record. Journal of the American Medical Informatics Association 2020;27(3):429 View
  4. Ford E, Oswald M, Hassan L, Bozentko K, Nenadic G, Cassell J. Should free-text data in electronic medical records be shared for research? A citizens’ jury study in the UK. Journal of Medical Ethics 2020;46(6):367 View
  5. Wetzels M, Broers E, Peters P, Feijs L, Widdershoven J, Habibovic M. Patient Perspectives on Health Data Privacy and Management: “Where Is My Data and Whose Is It?”. International Journal of Telemedicine and Applications 2018;2018:1 View
  6. Skovgaard L, Wadmann S, Hoeyer K. A review of attitudes towards the reuse of health data among people in the European Union: The primacy of purpose and the common good. Health Policy 2019;123(6):564 View
  7. Shah N, Coathup V, Teare H, Forgie I, Giordano G, Hansen T, Groeneveld L, Hudson M, Pearson E, Ruetten H, Kaye J. Sharing data for future research—engaging participants’ views about data governance beyond the original project: a DIRECT Study. Genetics in Medicine 2019;21(5):1131 View
  8. Kreitmair K, Cho M, Magnus D. Consent and engagement, security, and authentic living using wearable and mobile health technology. Nature Biotechnology 2017;35(7):617 View
  9. Stockdale J, Cassell J, Ford E. “Giving something back”: A systematic review and ethical enquiry of public opinions on the use of patient data for research in the United Kingdom and the Republic of Ireland. Wellcome Open Research 2018;3:6 View
  10. Silina V, Kalda R. Challenges for clinical practice and research in family medicine in reducing the risk of chronic diseases. Notes on the EGPRN Spring Conference 2017 in Riga. European Journal of General Practice 2018;24(1):112 View
  11. Uwizeyemungu S, Poba-Nzaou P, Cantinotti M. European Hospitals’ Transition Toward Fully Electronic-Based Systems: Do Information Technology Security and Privacy Practices Follow?. JMIR Medical Informatics 2019;7(1):e11211 View
  12. Crowhurst N, Bergin M, Wells J. Implications for nursing and healthcare research of the general data protection regulation and retrospective reviews of patients’ data. Nurse Researcher 2019;27(1):45 View
  13. Burns K, McBride C, Patel B, FitzGerald G, Mathews S, Drennan J. Creating Consumer-Generated Health Data: Interviews and a Pilot Trial Exploring How and Why Patients Engage. Journal of Medical Internet Research 2019;21(6):e12367 View
  14. Tsai F, Junod V. Medical research using governments’ health claims databases: with or without patients’ consent?. Journal of Public Health 2018;40(4):871 View
  15. Mbuthia D, Molyneux S, Njue M, Mwalukore S, Marsh V. Kenyan health stakeholder views on individual consent, general notification and governance processes for the re-use of hospital inpatient data to support learning on healthcare systems. BMC Medical Ethics 2019;20(1) View
  16. Courbier S, Dimond R, Bros-Facer V. Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - quantitative survey and recommendations. Orphanet Journal of Rare Diseases 2019;14(1) View
  17. van Veen E. Observational health research in Europe: understanding the General Data Protection Regulation and underlying debate. European Journal of Cancer 2018;104:70 View
  18. Shen N, Bernier T, Sequeira L, Strauss J, Silver M, Carter-Langford A, Wiljer D. Understanding the patient privacy perspective on health information exchange: A systematic review. International Journal of Medical Informatics 2019;125:1 View
  19. Wagner L, Frisch M, Turner-Brown L, Andrews S, Edwards A, Moultrie R, Alvarez Rivas A, Wheeler A, Raspa M. Preferences for the research use of electronic health records among young adults with fragile X syndrome or autism spectrum disorder. Disability and Health Journal 2020;13(4):100927 View
  20. Stoeklé H, Bollet M, Cobat A, Charlier P, Bloch O, Flatot J, Draghi C, Tolyan V, Hervé C, Desvaux P, Uzan L, Grynberg M, Alcaïs A, Tolédano A, Vogt G. French‐style genetics v. 2.0: The “e‐CohortE” project. Clinical Genetics 2019;96(4):330 View
  21. Jones R, Krenz C, Gornick M, Griffith K, Spence R, Bradbury A, De Vries R, Hawley S, Hayward R, Zon R, Bolte S, Sadeghi N, Schilsky R, Jagsi R. Patient Preferences Regarding Informed Consent Models for Participation in a Learning Health Care System for Oncology. JCO Oncology Practice 2020;16(9):e977 View
  22. Garcelon N, Neuraz A, Salomon R, Faour H, Benoit V, Delapalme A, Munnich A, Burgun A, Rance B. A clinician friendly data warehouse oriented toward narrative reports: Dr. Warehouse. Journal of Biomedical Informatics 2018;80:52 View
  23. Petersen C. User-focused data sharing agreements: a foundation for the genomic future. JAMIA Open 2019;2(4):402 View
  24. Brill S, Moss K, Prater L. Transformation of the Doctor–Patient Relationship: Big Data, Accountable Care, and Predictive Health Analytics. HEC Forum 2019;31(4):261 View
  25. Hassan L, Swarbrick C, Sanders C, Parker A, Machin M, Tully M, Ainsworth J. Tea, talk and technology: patient and public involvement to improve connected health ‘wearables’ research in dementia. Research Involvement and Engagement 2017;3(1) View
  26. Kim K, Sankar P, Wilson M, Haynes S. Factors affecting willingness to share electronic health data among California consumers. BMC Medical Ethics 2017;18(1) View
  27. Budin-Ljøsne I, Teare H, Kaye J, Beck S, Bentzen H, Caenazzo L, Collett C, D’Abramo F, Felzmann H, Finlay T, Javaid M, Jones E, Katić V, Simpson A, Mascalzoni D. Dynamic Consent: a potential solution to some of the challenges of modern biomedical research. BMC Medical Ethics 2017;18(1) View
  28. Pandya-Wood R, Barron D, Elliott J. A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards. Research Involvement and Engagement 2017;3(1) View
  29. Broes S, Verbaanderd C, Casteels M, Lacombe D, Huys I. Sharing of Clinical Trial Data and Samples: The Cancer Patient Perspective. Frontiers in Medicine 2020;7 View
  30. Dijkers M. A beginner’s guide to data stewardship and data sharing. Spinal Cord 2019;57(3):169 View
  31. O’Brien E, Rodriguez A, Kum H, Schanberg L, Fitz-Randolph M, O’Brien S, Setoguchi S. Patient perspectives on the linkage of health data for research: Insights from an online patient community questionnaire. International Journal of Medical Informatics 2019;127:9 View
  32. Grundstrom C, Korhonen O, Väyrynen K, Isomursu M. Insurance Customers’ Expectations for Sharing Health Data: Qualitative Survey Study. JMIR Medical Informatics 2020;8(3):e16102 View
  33. Karampela M, Ouhbi S, Isomursu M. Personal health data: A systematic mapping study. International Journal of Medical Informatics 2018;118:86 View
  34. Kraft S, Cho M, Gillespie K, Halley M, Varsava N, Ormond K, Luft H, Wilfond B, Lee S. Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research. The American Journal of Bioethics 2018;18(4):3 View
  35. Smith T, Dunn M, Levin K, Tsakraklides S, Mitchell S, van de Poll-Franse L, Ward K, Wiggins C, Wu X, Hurlbert M, Aaronson N. Cancer survivor perspectives on sharing patient-generated health data with central cancer registries. Quality of Life Research 2019;28(11):2957 View
  36. Stoeklé H, Mamzer-Bruneel M, Frouart C, Le Tourneau C, Laurent-Puig P, Vogt G, Hervé C. Molecular Tumor Boards: Ethical Issues in the New Era of Data Medicine. Science and Engineering Ethics 2018;24(1):307 View
  37. Peiper N, Baumgartner P, Chew R, Hsieh Y, Bieler G, Bobashev G, Siege C, Zarkin G. Patterns of Twitter Behavior Among Networks of Cannabis Dispensaries in California. Journal of Medical Internet Research 2017;19(7):e236 View
  38. Hammack-Aviran C, Brelsford K, McKenna K, Graham R, Lampron Z, Beskow L. Research Use of Electronic Health Records: Patients’ Views on Alternative Approaches to Permission. AJOB Empirical Bioethics 2020;11(3):172 View
  39. Stockdale J, Cassell J, Ford E. “Giving something back”: A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland. Wellcome Open Research 2019;3:6 View
  40. Joo S, Kim S, Kim Y. An exploratory study of health scientists’ data reuse behaviors. Aslib Journal of Information Management 2017;69(4):389 View
  41. Winickoff D, Jamal L, Anderson N. New modes of engagement for big data research. Journal of Responsible Innovation 2016;3(2):169 View
  42. Shen N, Sequeira L, Silver M, Carter-Langford A, Strauss J, Wiljer D. Patient Privacy Perspectives on Health Information Exchange in a Mental Health Context: Qualitative Study. JMIR Mental Health 2019;6(11):e13306 View
  43. Cardillo L, Cahill F, Wylie H, Williams A, Zylstra J, Davies A, Fullwood L, Van Hemelrijck M. Patients' perspectives on opt-out consent for observational research: systematic review and focus group. British Journal of Nursing 2018;27(22):1321 View
  44. Fiske A, Prainsack B, Buyx A. Data Work: Meaning-Making in the Era of Data-Rich Medicine. Journal of Medical Internet Research 2019;21(7):e11672 View
  45. Mamo N, Martin G, Desira M, Ellul B, Ebejer J. Dwarna: a blockchain solution for dynamic consent in biobanking. European Journal of Human Genetics 2020;28(5):609 View
  46. Abuhammad S, Alzoubi K, Al-Azzam S, Karasneh R. <p>Knowledge and Practice of Patients’ Data Sharing and Confidentiality Among Nurses in Jordan</p>. Journal of Multidisciplinary Healthcare 2020;Volume 13:935 View
  47. Skelton E, Drey N, Rutherford M, Ayers S, Malamateniou C. Electronic consenting for conducting research remotely: A review of current practice and key recommendations for using e-consenting. International Journal of Medical Informatics 2020;143:104271 View
  48. Jokinen A, Stolt M, Suhonen R. Ethical issues related to eHealth: An integrative review. Nursing Ethics 2021;28(2):253 View
  49. Armstrong R, Mouton R, Hinchliffe R. Routinely collected data and patient‐centred research in anaesthesia and peri‐operative care: a narrative review. Anaesthesia 2021;76(8):1122 View
  50. De Sutter E, Zaçe D, Boccia S, Di Pietro M, Geerts D, Borry P, Huys I. Implementation of Electronic Informed Consent in Biomedical Research and Stakeholders’ Perspectives: Systematic Review. Journal of Medical Internet Research 2020;22(10):e19129 View
  51. Stoeklé H, Ivasilevitch A, Hervé C. Dynamic Consent in Neuroscience Too?. AJOB Neuroscience 2021;12(1):70 View
  52. Wallace S, Miola J. Adding dynamic consent to a longitudinal cohort study: A qualitative study of EXCEED participant perspectives. BMC Medical Ethics 2021;22(1) View
  53. Lensink M, Boers S, M Gulmans V, Jongsma K, Bredenoord A. Mini-Gut Feelings: Perspectives of People with Cystic Fibrosis on the Ethics and Governance of Organoid Biobanking. Personalized Medicine 2021;18(3):241 View
  54. Viberg Johansson J, Bentzen H, Shah N, Haraldsdóttir E, Jónsdóttir G, Kaye J, Mascalzoni D, Veldwijk J. Preferences of the Public for Sharing Health Data: Discrete Choice Experiment. JMIR Medical Informatics 2021;9(7):e29614 View
  55. Reeves J, Treharne G, Theodore (Ngāpuhi and Te Arawa) R, Edwards (Taranaki Iwi, Ngāruahine, Tāngahoe, Pakakohi, Ngāti W, Ratima (Whakatōhea and Ngāti Awa) M, Poulton R. Understanding the data-sharing debate in the context of Aotearoa/New Zealand: a narrative review on the perspectives of funders, publishers/journals, researchers, participants and Māori collectives. Kōtuitui: New Zealand Journal of Social Sciences Online 2022;17(1):1 View
  56. Coe D, Birt A, Forbes G, Ling J, Foster M, Robson S, McDonald J, Yiannakou Y. The connected patient project: moving towards a population-based primary health care research registry. BMC Health Services Research 2021;21(1) View
  57. Zidaru T, Morrow E, Stockley R. Ensuring patient and public involvement in the transition to AI‐assisted mental health care: A systematic scoping review and agenda for design justice. Health Expectations 2021;24(4):1072 View
  58. Sleigh J, Vayena E. Public engagement with health data governance: the role of visuality. Humanities and Social Sciences Communications 2021;8(1) View
  59. Viberg Johansson J, Shah N, Haraldsdóttir E, Bentzen H, Coy S, Kaye J, Mascalzoni D, Veldwijk J. Governance mechanisms for sharing of health data: An approach towards selecting attributes for complex discrete choice experiment studies. Technology in Society 2021;66:101625 View
  60. Mudd-Martin G, Cirino A, Barcelona V, Fox K, Hudson M, Sun Y, Taylor J, Cameron V. Considerations for Cardiovascular Genetic and Genomic Research With Marginalized Racial and Ethnic Groups and Indigenous Peoples: A Scientific Statement From the American Heart Association. Circulation: Genomic and Precision Medicine 2021;14(4) View
  61. Schroeder K, Bertelsen N, Scott J, Deane K, Dormer L, Nair D, Elliott J, Krug S, Sargeant I, Chapman H, Brooke N. Building from Patient Experiences to Deliver Patient-Focused Healthcare Systems in Collaboration with Patients: A Call to Action. Therapeutic Innovation & Regulatory Science 2022;56(5):848 View
  62. De Sutter E, Verreydt S, Yskout K, Geerts D, Borry P, Outtier A, Ferrante M, Vandermeulen C, Vanmechelen N, Van der Schueren B, Huys I. Using provocative design to foster electronic informed consent innovation. BMC Medical Informatics and Decision Making 2022;22(1) View
  63. Joseph C, Tang A, Chesla D, Epstein M, Pawloski P, Stevens A, Waring S, Ahmedani B, Johnson C, Peltz-Rauchman C. Demographic differences in willingness to share electronic health records in the All of Us Research Program. Journal of the American Medical Informatics Association 2022;29(7):1271 View
  64. Jagals M, Karger E, Ahlemann F. Already grown-up or still in puberty? A bibliometric review of 16 years of data governance research. Corporate Ownership and Control 2019;19(1):105 View
  65. Nwebonyi N, Silva S, de Freitas C. Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse: The Importance of Trust in Science and Other Institutions. Frontiers in Public Health 2022;10 View
  66. Hermansen A, Regier D, Pollard S. Developing Data Sharing Models for Health Research with Real-World Data: A Scoping Review of Patient and Public Preferences. Journal of Medical Systems 2022;46(12) View
  67. Goncharov L, Suominen H, Cook M. Dynamic consent and personalised medicine. Medical Journal of Australia 2022;216(11):547 View
  68. Muller S, van Thiel G, Vrana M, Mostert M, van Delden J. Patients’ and Publics’ Preferences for Data-Intensive Health Research Governance: Survey Study. JMIR Human Factors 2022;9(3):e36797 View
  69. Verweij M, Gal R, Burbach J, Young-Afat D, van der Velden J, van der Graaf R, May A, Relton C, Intven M, Verkooijen H. Most patients reported positively or neutrally of having served as controls in the trials within cohorts design. Journal of Clinical Epidemiology 2022;148:39 View
  70. Rusu I, Popa-Fotea N, Stanculescu M, Rusu D, Dumitru A, Scafa-Udriste A, Udrea O, Micheu M. The Attitude of Patients from a Romanian Tertiary Cardiology Center Regarding Participation in Biomarker-Based Clinical Trials. Medicina 2021;57(11):1180 View
  71. Wang Z, Stell A, Sinnott R. A GDPR-Compliant Dynamic Consent Mobile Application for the Australasian Type-1 Diabetes Data Network. Healthcare 2023;11(4):496 View
  72. Scherer J, Yogarasa V, Rauer T, Pape H, Heining S. Perspectives of Patients With Orthopedic Trauma on Fully Automated Digital Physical Activity Measurement at Home: Cross-sectional Survey Study. JMIR Formative Research 2023;7:e35312 View
  73. Kassam I, Ilkina D, Kemp J, Roble H, Carter-Langford A, Shen N. Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review. Journal of Medical Internet Research 2023;25:e42507 View
  74. Hasani N, Farhadi F, Morris M, Nikpanah M, Rahmim A, Xu Y, Pariser A, Collins M, Summers R, Jones E, Siegel E, Saboury B. Artificial Intelligence in Medical Imaging and its Impact on the Rare Disease Community: Threats, Challenges and Opportunities. PET Clinics 2022;17(1):13 View
  75. Simpson E, Brown R, Sillence E, Coventry L, Lloyd K, Gibbs J, Tariq S, Durrant A. Understanding the Barriers and Facilitators to Sharing Patient-Generated Health Data Using Digital Technology for People Living With Long-Term Health Conditions: A Narrative Review. Frontiers in Public Health 2021;9 View
  76. Meagher K, Curtis S, Gamm K, Sutton E, McCormick J, Sharp R. At a Moment’s Notice: Community Advisory Board Perspectives on Biobank Communication to Supplement Broad Consent. Public Health Genomics 2020;23(3-4):77 View
  77. Amorim M, Silva S, Machado H, Teles E, Baptista M, Maia T, Nwebonyi N, de Freitas C. Benefits and Risks of Sharing Genomic Data for Research: Comparing the Views of Rare Disease Patients, Informal Carers and Healthcare Professionals. International Journal of Environmental Research and Public Health 2022;19(14):8788 View
  78. McCormick J, Hopkins M. Exploring public concerns for sharing and governance of personal health information: a focus group study. JAMIA Open 2021;4(4) View
  79. Tseng C, Chen R, Tsai S, Wu T, Tsaur W, Chiu H, Yang C, Lo Y. Exploring the COVID-19 Pandemic as a Catalyst for Behavior Change Among Patient Health Record App Users in Taiwan: Development and Usability Study. Journal of Medical Internet Research 2022;24(1):e33399 View
  80. Kalkman S, van Delden J, Banerjee A, Tyl B, Mostert M, van Thiel G. Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence. Journal of Medical Ethics 2022;48(1):3 View
  81. 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
  82. Loosman I, Nickel P. Towards a Design Toolkit of Informed Consent Models Across Fields: A Systematic Review. Science and Engineering Ethics 2022;28(5) View
  83. McCormick J, Hopkins M, Lehman E, Green M. Mining the Data: Exploring Rural Patients’ Attitudes about the Use of Their Personal Information in Research. AJOB Empirical Bioethics 2022;13(2):89 View
  84. Cumyn A, Ménard J, Barton A, Dault R, Lévesque F, Ethier J. Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review. Journal of Medical Internet Research 2023;25:e45002 View
  85. Verweij M, Gal R, Burbach M, Young-Afat D, van der Velden J, van der Graaf R, May A, Relton C, Intven M, Verkooijen H. Large Majority of Patients Report Positively or Neutrally of Unknowingly Having Served as Controls in the Trials within Cohorts (TwiCs) Design. SSRN Electronic Journal 2022 View
  86. Muller S, van Thiel G, Mostert M, van Delden J. Dynamic consent, communication and return of results in large-scale health data reuse: Survey of public preferences. DIGITAL HEALTH 2023;9 View
  87. Beusink M, Koetsveld F, van Scheijen S, Janssen T, Buiter M, Schmidt M, Rebers S. Health Research with Data in a Time of Privacy: Which Information do Patients Want?. Journal of Empirical Research on Human Research Ethics 2023;18(4):304 View
  88. Khalid M, Ahmed M, Kim J. Enhancing Data Protection in Dynamic Consent Management Systems: Formalizing Privacy and Security Definitions with Differential Privacy, Decentralization, and Zero-Knowledge Proofs. Sensors 2023;23(17):7604 View
  89. Shi J, Yuan R, Yan X, Wang M, Qiu J, Ji X, Yu G. Factors Influencing the Sharing of Personal Health Data Based on the Integrated Theory of Privacy Calculus and Theory of Planned Behaviors Framework: Results of a Cross-Sectional Study of Chinese Patients in the Yangtze River Delta. Journal of Medical Internet Research 2023;25:e46562 View
  90. Bedenik T, Cahir C, Bennett K. Building public trust and confidence in secondary use of health data for healthcare improvement and research: a qualitative study pre-protocol. HRB Open Research 2023;6:47 View
  91. Dong Y, Mun S, Wang Y. A blockchain-enabled sharing platform for personal health records. Heliyon 2023;9(7):e18061 View
  92. Biasiotto R, Viberg Johansson J, Alemu M, Romano V, Bentzen H, Kaye J, Ancillotti M, Blom J, Chassang G, Hallinan D, Jónsdóttir G, Monasterio Astobiza A, Rial-Sebbag E, Rodríguez-Arias D, Shah N, Skovgaard L, Staunton C, Tschigg K, Veldwijk J, Mascalzoni D. Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries. Journal of Medical Internet Research 2023;25:e47066 View
  93. Lee A, Koo D, Kim I, Lee E, Kim H, Yoo S, Kim J, Choi E, Lee H. Identifying facilitators of and barriers to the adoption of dynamic consent in digital health ecosystems: a scoping review. BMC Medical Ethics 2023;24(1) View
  94. Wu D, Nam R, Leung K, Waraich H, Purnomo A, Chou O, Perone F, Pawar S, Faraz F, Liu H, Zhou J, Liu T, Chan J, Tse G. Population-Based Clinical Studies Using Routinely Collected Data in Hong Kong, China: A Systematic Review of Trends and Established Local Practices. Cardiovascular Innovations and Applications 2023;8(1) View
  95. Khalid M, Ahmed M, Helfert M, Kim J. Privacy-First Paradigm for Dynamic Consent Management Systems: Empowering Data Subjects through Decentralized Data Controllers and Privacy-Preserving Techniques. Electronics 2023;12(24):4973 View
  96. 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
  97. Nemat A, Becker S, Lucas S, Thomas S, Gadea I, Charton J. The Principle-at-Risk Analysis (PaRA): Operationalising Digital Ethics by Bridging Principles and Operations of a Digital Ethics Advisory Panel. Minds and Machines 2023;33(4):737 View
  98. Afraz A, Montazeri M, Shahrbabaki M, Ahmadian L, Jahani Y. The viewpoints of parents of children with mental disorders regarding the confidentiality and security of their children’s information in the Iranian national electronic health record system. International Journal of Medical Informatics 2024;183:105334 View
  99. Papadopoulos K, von Wyl V, Gille F. What is public trust in national electronic health record systems? A scoping review of qualitative research studies from 1995 to 2021. DIGITAL HEALTH 2024;10 View
  100. Siette J, Campbell C, Adam P, Harris C. Exploring the usability of the virtual reality module LEAF CAFÉ: a qualitative think-aloud study. BMC Geriatrics 2024;24(1) View
  101. Lalova-Spinks T, Saesen R, Silva M, Geissler J, Shakhnenko I, Camaradou J, Huys I. Patients’ knowledge, preferences, and perspectives about data protection and data control: an exploratory survey. Frontiers in Pharmacology 2024;14 View
  102. Sermontyte-Baniule R, Helander N, Nieminen H. A Literature Perspective of Stakeholder’s Perceptions of Value and Risks for the Secondary Use of Health Data. SN Computer Science 2024;5(3) View
  103. Oliva A, Kaphle A, Reguant R, Sng L, Twine N, Malakar Y, Wickramarachchi A, Keller M, Ranbaduge T, Chan E, Breen J, Buckberry S, Guennewig B, Haas M, Brown A, Cowley M, Thorne N, Jain Y, Bauer D. Future-proofing genomic data and consent management: a comprehensive review of technology innovations. GigaScience 2024;13 View
  104. Govardanan C, Murugan R, Yenduri G, Gurrammagari D, Bhulakshmi D, Kandati D, Supriya Y, Gadekallu T, Rathore R, Jhaveri R. The Amalgamation of Federated Learning and Explainable Artificial Intelligence for the Internet of Medical Things: A Review. Recent Advances in Computer Science and Communications 2024;17(4) View
  105. Bedenik T, Cahir C, Bennett K. Building public trust and confidence in secondary use of health data for healthcare improvement and research: a qualitative study pre-protocol. HRB Open Research 2024;6:47 View
  106. Teodorowski P, Jones E, Tahir N, Ahmed S, Rodgers S, Frith L. Public Involvement and Engagement in Big Data Research: Scoping Review. Journal of Participatory Medicine 2024;16:e56673 View
  107. Bilodeau E, Cumyn A, Ménard J, Barton A, Dault R, Ethier J. Utilisations secondaires des données de santé : impacts de la transparence. Canadian Journal of Bioethics 2024;7(2-3):118 View
  108. Niño de Rivera S, Masterson Creber R, Zhao Y, Eslami S, Mangal S, Dugdale L, Reading Turchioe M, Chima S. Public perspectives on increased data sharing in health research in the context of the 2023 National Institutes of Health Data Sharing Policy. PLOS ONE 2024;19(8):e0309161 View
  109. Lay W, Gasparini L, Siero W, Hughes E. A rapid review of the benefits and challenges of dynamic consent. Research Ethics 2024 View
  110. Yusuf Z, Dixon W, Sharp C, Cook L, Holm S, Sanders C. Building and Sustaining Public Trust in Health Data Sharing for Musculoskeletal Research: Semistructured Interview and Focus Group Study. Journal of Medical Internet Research 2024;26:e53024 View
  111. Alam P, Bolio A, Lin L, Larson H, Ayatollahi H. Stakeholders’ perceptions of personal health data sharing: A scoping review. PLOS Digital Health 2024;3(11):e0000652 View

Books/Policy Documents

  1. Litinski V. Health Care Delivery and Clinical Science. View
  2. Litinski V. Transforming Gaming and Computer Simulation Technologies across Industries. View
  3. Knudsen L, Hansen P, Pedersen M, Merlo D. Encyclopedia of Environmental Health. View
  4. Hansen S, Heyder C, Wiesemann C. Die klinische Anwendung von humanen induzierten pluripotenten Stammzellen. View
  5. Litinski V. Healthcare Policy and Reform. View
  6. . Telemedicine Technologies. View
  7. Staff A, Redman C, Roberts J. Chesley's Hypertensive Disorders in Pregnancy. View
  8. Maierà A. GDPR Requirements for Biobanking Activities Across Europe. View
  9. Duhm-Harbeck P, Köbler J. GDPR Requirements for Biobanking Activities Across Europe. View
  10. Brizioli S. GDPR Requirements for Biobanking Activities Across Europe. View