cirpublications.com-kSSm-1790899042-w975330834 1790899042 Clinical Intelligence Research Press info@cirpublications.com Clinical Intelligence Research Press Journal of Health Informatics and Digital Systems J. Health Inform. Digit. Syst. 3149-8973 2024 4 1 Victor Santos Rafael Costa Bruno Teixeira 2024 10.68159/w975330834 https://cirpublications.com/pub/journal/2/article/w975330834 Näher AF, Vorstenbosch S, Gribbell B, O’Sullivan L, Browne JL, Thompson B, et al. Secondary data for global health digitalisation. Lancet Digit Health. 2023;5(1):e29-e31. 10.1016/S2589-7500(22)00195-9 Zhang J, Godec J, O’Leary C, Symons J, Morley J. Mapping and evaluating national data flows: transparency, privacy, and guiding infrastructural transformation. Lancet Digit Health. 2023;5(10):e737-e748. 10.1016/S2589-7500(23)00157-7 Kotecha D, Asselbergs FW, Anker SD, Banerjee A, Baigent C, Beger B, et al. CODE-EHR best-practice framework for the use of structured electronic health-care records in clinical research. Lancet Digit Health. 2022;4(10):e757-e764. 10.1016/S2589-7500(22)00151-0 Maxwell L, Shreedhar P, Dagliati A, De Angelis G, Marangoni P, Sansone S-A. FAIR, ethical, and coordinated data sharing for COVID-19 response: a scoping review and cross-sectional survey of COVID-19 data sharing platforms and registries. Lancet Digit Health. 2023;5(9):e577-e586. 10.1016/S2589-7500(23)00129-2 Alberto IRI, Alberto NRI, Ghosh AK, Jain B, Jayakumar S, Martinez-Martin N, et al. The impact of commercial health datasets on medical research and health-care algorithms. Lancet Digit Health. 2023;5(5):e288-e294. 10.1016/S2589-7500(23)00025-0 Alderman JE, Palmer J, Ganapathi S, McCradden MD, Glocker B, Liu X. Recommendations for transparent documentation of health datasets to mitigate bias in artificial intelligence: the STANDING Together consensus study. Lancet Digit Health. 2024;6(12):e827-e847. 10.1016/S2589-7500(24)00224-3 Kim J, Kim H, Bell E, Bath T, Paul P, Pham A, et al. Patient perspectives about decisions to share medical data and biospecimens for research. JAMA Netw Open. 2019;2(8):e199550. 10.1001/jamanetworkopen.2019.9550 Schwartz MLB, McDonald WS, Hallquist MLG, Hu Y, McCormick CZ, Walters NL, et al. Genetics visit uptake among individuals receiving clinically actionable genomic screening results. JAMA Netw Open. 2024;7(3):e242388. 10.1001/jamanetworkopen.2024.2388 Callahan KP, Mueller R, Flibotte J, Largent EA, Feudtner C. Measures of utility among studies of genomic medicine for critically ill infants: a systematic review. JAMA Netw Open. 2022;5(8):e2225980. 10.1001/jamanetworkopen.2022.25980 Danchev V, Min Y, Borghi J, Baiocchi M, Ioannidis JPA. Evaluation of data sharing after implementation of the international committee of medical journal editors data sharing statement requirement. JAMA Netw Open. 2021;4(1):e2033972. 10.1001/jamanetworkopen.2020.33972 Emanuel EJ, Boyle CW. Assessment of length and readability of informed consent documents for COVID-19 vaccine trials. JAMA Netw Open. 2021;4(4):e2110843. 10.1001/jamanetworkopen.2021.10843 Gupta R, Iyengar R, Sharma M, Cannuscio CC, Merchant RM, Mitra N, et al. Consumer views on privacy protections and sharing of personal digital health information. JAMA Netw Open. 2023;6(3):e231305. 10.1001/jamanetworkopen.2023.1305 Youssef A, Ng MY, Long J, Miner A, Hernandez-Boussard T, Larson DB, et al. Organizational factors in clinical data sharing for artificial intelligence in health care. JAMA Netw Open. 2023;6(12):e2348422. 10.1001/jamanetworkopen.2023.48422 Bergeat D, Lombard N, Gasmi A, Le Floch B, Naudet F. Data sharing and reanalyses among randomized clinical trials published in surgical journals before and after adoption of a data availability and reproducibility policy. JAMA Netw Open. 2022;5(6):e2215209. 10.1001/jamanetworkopen.2022.15209 Miller DG, Kim SYH, Li X, Dickert NW, Flory JH, Runge MS, et al. Ethical acceptability of postrandomization consent in pragmatic clinical trials. JAMA Netw Open. 2018;1(8):e186149. 10.1001/jamanetworkopen.2018.6149 Kuo TT, Ohno-Machado L. The evolving privacy and security concerns for genomic data analysis and sharing as observed from the iDASH competition. J Am Med Inform Assoc. 2022;29(12):2182-90. Savage SK, LoTempio J, Smith ED, Andrew EH, Mas G, Kahn-Kirby AH, et al. Using a chat-based informed consent tool in large-scale genomic research. J Am Med Inform Assoc. 2024;31(2):472-8. Walton NA, Ye ZJ, Zhang A, Gevaert O, Kamaya A. Enabling the clinical application of artificial intelligence in genomics: a perspective of the AMIA genomics and translational bioinformatics workgroup. J Am Med Inform Assoc. 2024;31(2):536-48. Visweswaran S, Becich MJ, D’Itri VS, Sendro ER, MacFadden D, Anderson NR, et al. An atomic approach to the design and implementation of a research data warehouse. J Am Med Inform Assoc. 2022;29(4):601-8. Beyene M, Harrar SW, Zhao H, Klein RJ. A scoping review of distributed ledger technology in genomics: thematic analysis and directions for future research. J Am Med Inform Assoc. 2022;29(8):1433-44. Labkoff SE, Sittig DF, McCoy AB. Identifying the capabilities for creating next-generation registries: a guide for data leaders and a case for “registry science”. J Am Med Inform Assoc. 2024;31(4):1001-10. Dolin RH, Boxwala A, Shalaby J. Introducing HL7 FHIR genomics operations: a developer-friendly approach to genomics-EHR integration. J Am Med Inform Assoc. 2023;30(3):485-93. Schairer CE, Cheung C, Rubanovich CK, Cho M, Cranor LF, Bloss CS. Disposition toward privacy and information disclosure in the context of emerging health technologies. J Am Med Inform Assoc. 2019;26(7):610-9. Triplett C, Fletcher B, Vichi F, Rioux K, Peek N, Urquhart A, et al. Codesigning a community-based participatory research project to assess tribal perspectives on privacy and health data sharing: a report from the Strong Heart Study. J Am Med Inform Assoc. 2022;29(6):1120-7. Doutreligne M, Hueso A, Allier A, Savy N, Lamer A. Good practices for clinical data warehouse implementation: a case study in France. PLOS Digit Health. 2023;2(7):e0000298. 10.1371/journal.pdig.0000298 Sikstrom L, Maslej MM, Hui K, Findlay Z, Buchman DZ, Hill SL. Conceptualising fairness: three pillars for medical algorithms and health equity. BMJ Health Care Inform. 2022;29(1):e100459. 10.1136/bmjhci-2021-100459 Watson H, Gallifant J, Lai Y, Radunsky AP, Villanueva C, Martinez N, et al. Delivering on NIH data sharing requirements: avoiding open data in appearance only. BMJ Health Care Inform. 2023;30(1):e100771. 10.1136/bmjhci-2022-100771 Gordon B, Barrett J, Fennessy C, Cake C, Milward A, Irwin C, et al. Development of a data utility framework to support effective health data curation. BMJ Health Care Inform. 2021;28(1):e100303. 10.1136/bmjhci-2020-100303