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

Participatory Medicine & E-Patients (773) Demographics of Users, Social & Digital Divide (739)

Published on in Vol 12, No 2 (2010): Apr-Jun

Sharing Medical Data for Health Research: The Early Personal Health Record Experience

Sharing Medical Data for Health Research: The Early Personal Health Record Experience

Sharing Medical Data for Health Research: The Early Personal Health Record Experience

Authors of this article:

Elissa R Weitzman1, 2, 3 Author Orcid Image ;   Liljana Kaci1, 4 ;   Kenneth D Mandl1, 3, 4, 5
Article Authors Cited by (102) Tweetations (11) Metrics

Journals

  1. Alaqra A, Fischer-Hübner S, Framner E. Enhancing Privacy Controls for Patients via a Selective Authentic Electronic Health Record Exchange Service: Qualitative Study of Perspectives by Medical Professionals and Patients. Journal of Medical Internet Research 2018;20(12):e10954 View
  2. Weng C, Friedman C, Rommel C, Hurdle J. A two-site survey of medical center personnel’s willingness to share clinical data for research: implications for reproducible health NLP research. BMC Medical Informatics and Decision Making 2019;19(S3) View
  3. Harle C, Golembiewski E, Rahmanian K, Krieger J, Hagmajer D, Mainous A, Moseley R. Patient preferences toward an interactive e-consent application for research using electronic health records. Journal of the American Medical Informatics Association 2018;25(3):360 View
  4. Berger M, Lipset C, Gutteridge A, Axelsen K, Subedi P, Madigan D. Optimizing the Leveraging of Real-World Data to Improve the Development and Use of Medicines. Value in Health 2015;18(1):127 View
  5. Liang X, Chen W, Li J, Mu Y, Tian Z. Incentive Mechanism of Medical Data Sharing Based On Information Entropy in Blockchain Environment. Journal of Physics: Conference Series 2019;1302(2):022056 View
  6. 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
  7. Xia Q, Sifah E, Asamoah K, Gao J, Du X, Guizani M. MeDShare: Trust-Less Medical Data Sharing Among Cloud Service Providers via Blockchain. IEEE Access 2017;5:14757 View
  8. Amann J, Zanini C, Rubinelli S, van Rijnsoever F. What Online User Innovation Communities Can Teach Us about Capturing the Experiences of Patients Living with Chronic Health Conditions. A Scoping Review. PLOS ONE 2016;11(6):e0156175 View
  9. Zhou T, Li X, Zhao H. Med-PPPHIS: Blockchain-Based Personal Healthcare Information System for National Physique Monitoring and Scientific Exercise Guiding. Journal of Medical Systems 2019;43(9) View
  10. Eggleston E, Weitzman E. Innovative Uses of Electronic Health Records and Social Media for Public Health Surveillance. Current Diabetes Reports 2014;14(3) View
  11. Weitzman E, Magane K, Wisk L. How Returning Aggregate Research Results Impacts Interest in Research Engagement and Planned Actions Relevant to Health Care Decision Making: Cohort Study. Journal of Medical Internet Research 2018;20(12):e10647 View
  12. Bouras A, Simoes E, Boren S, Hicks L, Zachary I, Buck C, Dhingra S, Ellis R. Non-Hispanic White Mothers’ Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel. Journal of Participatory Medicine 2020;12(2):e14062 View
  13. 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
  14. Weitzman E, Kaci L, Quinn M, Mandl K. Helping High-Risk Youth Move through High-Risk Periods: Personally Controlled Health Records for Improving Social and Health Care Transitions. Journal of Diabetes Science and Technology 2011;5(1):47 View
  15. Pearson J, Brownstein C, Brownstein J. Potential for Electronic Health Records and Online Social Networking to Redefine Medical Research. Clinical Chemistry 2011;57(2):196 View
  16. Harle C, Golembiewski E, Rahmanian K, Brumback B, Krieger J, Goodman K, Mainous A, Moseley R. Does an interactive trust-enhanced electronic consent improve patient experiences when asked to share their health records for research? A randomized trial. Journal of the American Medical Informatics Association 2019;26(7):620 View
  17. Weitzman E, Kelemen S, Kaci L, Mandl K. Willingness to share personal health record data for care improvement and public health: a survey of experienced personal health record users. BMC Medical Informatics and Decision Making 2012;12(1) View
  18. Thilakanathan D, Chen S, Nepal S, Calvo R. SafeProtect: Controlled Data Sharing With User-Defined Policies in Cloud-Based Collaborative Environment. IEEE Transactions on Emerging Topics in Computing 2016;4(2):301 View
  19. Malin B, Nyemba S, Paulett J. Learning relational policies from electronic health record access logs. Journal of Biomedical Informatics 2011;44(2):333 View
  20. Skatova A, Shiells K, Boyd A. Attitudes towards transactional data donation and linkage in a longitudinal population study: evidence from the Avon Longitudinal Study of Parents and Children. Wellcome Open Research 2019;4:192 View
  21. Leskinen S. Enhancing the Daily Routines of Equine Veterinarians using Mobile Technology. International Journal of Systems and Service-Oriented Engineering 2012;3(4):1 View
  22. 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
  23. Mansour E. Egyptian patients’ perceptions of using personal health records (PHRs): an exploratory study. Global Knowledge, Memory and Communication 2018;67(8/9):523 View
  24. Karampela M, Ouhbi S, Isomursu M. Personal health data: A systematic mapping study. International Journal of Medical Informatics 2018;118:86 View
  25. Rake E, van Gelder M, Grim D, Heeren B, Engelen L, van de Belt T. Personalized Consent Flow in Contemporary Data Sharing for Medical Research: A Viewpoint. BioMed Research International 2017;2017:1 View
  26. Lau A, Sintchenko V, Crimmins J, Magrabi F, Gallego B, Coiera E. Protocol for a randomised controlled trial examining the impact of a web-based personally controlled health management system on the uptake of influenza vaccination rates. BMC Health Services Research 2012;12(1) View
  27. Sunyaev A, Dehling T, Taylor P, Mandl K. Availability and quality of mobile health app privacy policies. Journal of the American Medical Informatics Association 2015;22(e1):e28 View
  28. Mir D. Frameworks for Companies to Share Data With Researchers [Point of View]. Proceedings of the IEEE 2015;103(9):1439 View
  29. Zapata B, Niñirola A, Fernández-Alemán J, Toval A. Seguridad y Privacidad en Carpetas Personales de Salud para Android e iOS. Iberian Journal of Information Systems and Technologies 2014;0(13) View
  30. Zaidan B, Zaidan A, Mat Kiah M. Impact of Data Privacy and Confidentiality on Developing Telemedicine Applications: A Review Participates Opinion and Expert Concerns. International Journal of Pharmacology 2011;7(3):382 View
  31. Carrión Señor I, Fernández-Alemán J, Toval A. Are Personal Health Records Safe? A Review of Free Web-Accessible Personal Health Record Privacy Policies. Journal of Medical Internet Research 2012;14(4):e114 View
  32. Stevenson F, Lloyd N, Harrington L, Wallace P. Use of electronic patient records for research: views of patients and staff in general practice. Family Practice 2013;30(2):227 View
  33. Karampela M, Ouhbi S, Isomursu M. Connected Health User Willingness to Share Personal Health Data: Questionnaire Study. Journal of Medical Internet Research 2019;21(11):e14537 View
  34. Turner A, Taylor J, Hartzler A, Osterhage K, Bosold A, Painter I, Demiris G. Personal health information management among healthy older adults: Varying needs and approaches. Journal of the American Medical Informatics Association 2021;28(2):322 View
  35. Keyes G, Nahai F, Iverson R, Singer R. Evidence-based Medicine and Data Sharing in Outpatient Plastic Surgery. Clinics in Plastic Surgery 2013;40(3):453 View
  36. Kim K, Joseph J, Ohno-Machado L. Comparison of consumers’ views on electronic data sharing for healthcare and research. Journal of the American Medical Informatics Association 2015;22(4):821 View
  37. Weitzman E, Adida B, Kelemen S, Mandl K, Shea B. Sharing Data for Public Health Research by Members of an International Online Diabetes Social Network. PLoS ONE 2011;6(4):e19256 View
  38. Thompson L, Black E, Duff W, Paradise Black N, Saliba H, Dawson K. Protected Health Information on Social Networking Sites: Ethical and Legal Considerations. Journal of Medical Internet Research 2011;13(1):e8 View
  39. Jian W, Wen H, Scholl J, Shabbir S, Lee P, Hsu C, Li Y. The Taiwanese method for providing patients data from multiple hospital EHR systems. Journal of Biomedical Informatics 2011;44(2):326 View
  40. Mandl K, McNabb M, Marks N, Weitzman E, Kelemen S, Eggleston E, Quinn M. Participatory surveillance of diabetes device safety: a social media-based complement to traditional FDA reporting. Journal of the American Medical Informatics Association 2014;21(4):687 View
  41. Berger M, Doban V. Big data, advanced analytics and the future of comparative effectiveness research. Journal of Comparative Effectiveness Research 2014;3(2):167 View
  42. Stevenson F. The use of electronic patient records for medical research: conflicts and contradictions. BMC Health Services Research 2015;15(1) View
  43. Trifiletti D, Showalter T. Big Data and Comparative Effectiveness Research in Radiation Oncology: Synergy and Accelerated Discovery. Frontiers in Oncology 2015;5 View
  44. Mazor K, Richards A, Gallagher M, Arterburn D, Raebel M, Nowell W, Curtis J, Paolino A, Toh S. Stakeholders’ views on data sharing in multicenter studies. Journal of Comparative Effectiveness Research 2017;6(6):537 View
  45. Sun R, Zheng H, Liu J, Du X, Guizani M. RETRACTED ARTICLE: Placement delivery array design for the coded caching scheme in medical data sharing. Neural Computing and Applications 2020;32(3):867 View
  46. 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
  47. Trinidad M, Platt J, Kardia S. The public’s comfort with sharing health data with third-party commercial companies. Humanities and Social Sciences Communications 2020;7(1) View
  48. Juga J, Juntunen J, Koivumäki T. Willingness to share personal health information: impact of attitudes, trust and control. Records Management Journal 2021;31(1):48 View
  49. Lacasse A, Gagnon V, Nguena Nguefack H, Gosselin M, Pagé M, Blais L, Guénette L. Chronic pain patients' willingness to share personal identifiers on the web for the linkage of medico‐administrative claims and patient‐reported data: The chronic pain treatment cohort. Pharmacoepidemiology and Drug Safety 2021;30(8):1012 View
  50. Skatova A, Shiells K, Boyd A. Attitudes towards transactional data donation and linkage in a longitudinal population study: evidence from the Avon Longitudinal Study of Parents and Children. Wellcome Open Research 2021;4:192 View
  51. Piasecki J, Walkiewicz-Żarek E, Figas-Skrzypulec J, Kordecka A, Dranseika V. Ethical issues in biomedical research using electronic health records: a systematic review. Medicine, Health Care and Philosophy 2021;24(4):633 View
  52. Preetha A, Kumar T. Securing IoT-based healthcare systems from counterfeit medicine penetration using Blockchain. Applied Nanoscience 2023;13(2):1263 View
  53. Sharma A, Kaur S, Singh M. A comprehensive review on blockchain and Internet of Things in healthcare. Transactions on Emerging Telecommunications Technologies 2021;32(10) View
  54. Wirth F, Meurers T, Johns M, Prasser F. Privacy-preserving data sharing infrastructures for medical research: systematization and comparison. BMC Medical Informatics and Decision Making 2021;21(1) View
  55. Naeem I, Quan H, Singh S, Chowdhury N, Chowdhury M, Saini V, TC T. Factors Associated With Willingness to Share Health Information: Rapid Review. JMIR Human Factors 2022;9(1):e20702 View
  56. Deruelle T, Kalouguina V, Trein P, Wagner J. Is there a “pandemic effect” on individuals’ willingness to take genetic tests?. European Journal of Human Genetics 2023;31(3):360 View
  57. McVay M, Jake-Schoffman D, Leong M, Lou X. Privacy Concerns in Group Format Lifestyle Interventions for Obesity. International Journal of Behavioral Medicine 2023;30(5):693 View
  58. Nunes Vilaza G, Coyle D, Bardram J. Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey. Journal of Medical Internet Research 2021;23(10):e31294 View
  59. Garett R, Young S. Ethical Views on Sharing Digital Data for Public Health Surveillance: Analysis of Survey Data Among Patients. Frontiers in Big Data 2022;5 View
  60. Soellner M, Koenigstorfer J. Motive perception pathways to the release of personal information to healthcare organizations. BMC Medical Informatics and Decision Making 2022;22(1) View
  61. Bakken V, Koposov R, Røst T, Clausen C, Nytrø Ø, Leventhal B, Westbye O, Koochakpour K, Mandahl A, Hafstad H, Skokauskas N. Attitudes of Mental Health Service Users Toward Storage and Use of Electronic Health Records. Psychiatric Services 2022;73(9):1013 View
  62. He Y, He Q, Li L, Wang W, Zha W, Liu Q, Mumtaz S. Factors Affecting Willingness on Sharing of Electronic Health Records Data: A Survey on Chinese Residents. Journal of Oncology 2022;2022:1 View
  63. Bloomfield S, Dunbar B, Schmit C, Sawyer A, Charles J. Developing an international database on long-term health effects of spaceflight. Acta Astronautica 2022;198:347 View
  64. 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
  65. Henkenjohann R. Role of Individual Motivations and Privacy Concerns in the Adoption of German Electronic Patient Record Apps—A Mixed-Methods Study. International Journal of Environmental Research and Public Health 2021;18(18):9553 View
  66. Khatatbeh M, Gharaibeh L, Khabour O, Abu-Farha R, Alzoubi K, Yon D. Jordanian views regarding sharing of medical data for research: A cross-sectional study during COVID-19 pandemic. PLOS ONE 2022;17(3):e0265695 View
  67. Hurtado-Torres M, Benítez-Martínez F, Rodríguez Domínguez C. Privacy and Securization of Patient Data in a Neural Blockchain: The Case of the Ehealth Phisicos Platform. SSRN Electronic Journal 2022 View
  68. Kim J, Im E, Kim H. From intention to action: The factors affecting health data sharing intention and action. International Journal of Medical Informatics 2023;175:105071 View
  69. Morse B, Kim K, Xu Z, Matsumoto C, Schilling L, Ohno-Machado L, Mak S, Keller M. Patient and researcher stakeholder preferences for use of electronic health record data: a qualitative study to guide the design and development of a platform to honor patient preferences. Journal of the American Medical Informatics Association 2023;30(6):1137 View
  70. K D, N D. Two Fish Encryption Based Blockchain Technology for Secured Data Storage. Journal of Machine and Computing 2023:216 View
  71. Malerbi F, Nakayama L, Gayle Dychiao R, Zago Ribeiro L, Villanueva C, Celi L, Regatieri C. Digital Education for the Deployment of Artificial Intelligence in Health Care. Journal of Medical Internet Research 2023;25:e43333 View
  72. 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
  73. 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
  74. Yu R, Liu S, Wang X. Dataset Distillation: A Comprehensive Review. IEEE Transactions on Pattern Analysis and Machine Intelligence 2024;46(1):150 View
  75. 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
  76. Wyatt D, Cook J, McKevitt C. Perceptions of the uses of routine general practice data beyond individual care in England: a qualitative study. BMJ Open 2018;8(1):e019378 View
  77. Koposov R, Stien L, Clausen C, Leventhal B, Westbye O, Nytrø Ø, Koochakpour K, Pant D, Røst T, Mandahl A, Hafstad H, Skokauskas N. Patients and family attitudes about clinical and research sharing of electronic clinical data. Nordic Journal of Psychiatry 2024;78(7):577 View

Books/Policy Documents

  1. Ravka N. Health Literacy. View
  2. Leskinen S. Veterinary Science. View
  3. Jabour A, Jones J. Universal Access in Human-Computer Interaction. Applications and Services for Quality of Life. View
  4. van den Akker M, Deckx L, Vos R, Muth C. Cancer and Chronic Conditions. View
  5. Ling H, Ling N. Proceedings of the 2011 2nd International Congress on Computer Applications and Computational Science. View
  6. Wicks P, van Staa T, Lipset C. Advances in Collating and Using Trial Data. View
  7. Ziefle M, Calero Valdez A. Human Aspects of IT for the Aged Population. Applications in Health, Assistance, and Entertainment. View
  8. Hummel P, Braun M, Dabrock P. The Ethics of Medical Data Donation. View
  9. Varisco L, Pavlovic M, Pillan M. Design, User Experience, and Usability. Design Philosophy and Theory. View
  10. Ravka N. Research Perspectives on the Role of Informatics in Health Policy and Management. View
  11. Manikandan R, Rengarajan A, Devibala C, Gayathri K, Malarvizhi T. Emerging Trends in Computing and Expert Technology. View
  12. Ravka N. Healthcare Ethics and Training. View
  13. Johnson K, Jimison H, Mandl K. Biomedical Informatics. View
  14. Mir D. Governing Privacy in Knowledge Commons. View