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Citing this Article

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Published on 15.04.16 in Vol 18, No 4 (2016): April

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

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

Karen Spencer, Caroline Sanders, Edgar A Whitley, David Lund, Jane Kaye, William Gregory Dixon

J Med Internet Res 2016 (Apr 15); 18(4):e66 

According to Crossref, the following articles are citing this article (DOI 10.2196/jmir.5011):

(note that this is only a small subset of citations)

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  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
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  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
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  20. Stoeklé H, Bollet M, Cobat A, Charlier P, Bloch OC, 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
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  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
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  23. . User-focused data sharing agreements: a foundation for the genomic future. JAMIA Open 2019;2(4):402
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  24. Brill SB, Moss KO, Prater L. Transformation of the Doctor–Patient Relationship: Big Data, Accountable Care, and Predictive Health Analytics. HEC Forum 2019;31(4):261
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  26. Kim KK, Sankar P, Wilson MD, Haynes SC. Factors affecting willingness to share electronic health data among California consumers. BMC Medical Ethics 2017;18(1)
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  27. Budin-Ljøsne I, Teare HJA, Kaye J, Beck S, Bentzen HB, Caenazzo L, Collett C, D’Abramo F, Felzmann H, Finlay T, Javaid MK, 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)
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  28. Pandya-Wood R, Barron DS, 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)
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  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
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  30. . A beginner’s guide to data stewardship and data sharing. Spinal Cord 2019;57(3):169
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  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
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  33. Karampela M, Ouhbi S, Isomursu M. Personal health data: A systematic mapping study. International Journal of Medical Informatics 2018;118:86
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  34. Kraft SA, Cho MK, Gillespie K, Halley M, Varsava N, Ormond KE, Luft HS, Wilfond BS, Lee SS. Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research. The American Journal of Bioethics 2018;18(4):3
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  35. Smith TG, Dunn ME, Levin KY, Tsakraklides SP, Mitchell SA, van de Poll-Franse LV, Ward KC, Wiggins CL, Wu XC, Hurlbert M, Aaronson NK. Cancer survivor perspectives on sharing patient-generated health data with central cancer registries. Quality of Life Research 2019;28(11):2957
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  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
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  37. Peiper NC, Baumgartner PM, Chew RF, Hsieh YP, Bieler GS, Bobashev GV, Siege C, Zarkin GA. Patterns of Twitter Behavior Among Networks of Cannabis Dispensaries in California. Journal of Medical Internet Research 2017;19(7):e236
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  38. Hammack-Aviran CM, Brelsford KM, McKenna KC, Graham RD, Lampron ZM, Beskow LM. Research Use of Electronic Health Records: Patients’ Views on Alternative Approaches to Permission. AJOB Empirical Bioethics 2020;11(3):172
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  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
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  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
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  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
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  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
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  45. Mamo N, Martin GM, Desira M, Ellul B, Ebejer J. Dwarna: a blockchain solution for dynamic consent in biobanking. European Journal of Human Genetics 2020;28(5):609
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  46. Abuhammad S, Alzoubi KH, Al-Azzam SI, Karasneh RA.

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  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
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  50. De Sutter E, Zaçe D, Boccia S, Di Pietro ML, 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
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  51. Stoeklé H, Ivasilevitch A, Hervé C. Dynamic Consent in Neuroscience Too?. AJOB Neuroscience 2021;12(1):70
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  52. Wallace SE, Miola J. Adding dynamic consent to a longitudinal cohort study: A qualitative study of EXCEED participant perspectives. BMC Medical Ethics 2021;22(1)
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  53. Lensink MA, Boers SN, M Gulmans VA, Jongsma KR, Bredenoord AL. Mini-gut feelings: perspectives of people with cystic fibrosis on the ethics and governance of organoid biobanking. Personalized Medicine 2021;18(3):241
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  54. Viberg Johansson J, Bentzen HB, Shah N, Haraldsdóttir E, Jónsdóttir GA, Kaye J, Mascalzoni D, Veldwijk J. Preferences of the Public for Sharing Health Data: Discrete Choice Experiment. JMIR Medical Informatics 2021;9(7):e29614
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  55. Reeves J, Treharne GJ, 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
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  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)
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  57. Zidaru T, Morrow EM, 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
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  58. Sleigh J, Vayena E. Public engagement with health data governance: the role of visuality. Humanities and Social Sciences Communications 2021;8(1)
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  60. Mudd-Martin G, Cirino AL, Barcelona V, Fox K, Hudson M, Sun YV, Taylor JY, Cameron VA. 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)
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  66. Hermansen A, Regier DA, 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)
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