{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T23:16:10Z","timestamp":1777504570730,"version":"3.51.4"},"reference-count":54,"publisher":"MDPI AG","issue":"11","license":[{"start":{"date-parts":[[2025,11,11]],"date-time":"2025-11-11T00:00:00Z","timestamp":1762819200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Data"],"abstract":"<jats:p>Background: Research in personalized medicine, with applications in oncology, dermatology, cardiology, urology, and general healthcare, requires facile and safe access to accurate data. Due to its particularly sensitive character, obtaining health-related data, storing it in repositories, and federating it are challenging, especially in the context of open science and FAIR data. Methods: An online survey was conducted among medical researchers to gain insights into their knowledge and experience regarding the following topics: health data repositories and data federation, as well as their opinions regarding data sharing and their willingness to participate in sharing data. Results: The survey was completed by 189 respondents, the majority of whom were attending physicians and PhD candidates. Most of them acknowledged the complex, beneficial implications of data federation in the medical field but had concerns about data protection, with 75% declaring that they would agree to share data. A general lack of awareness (80%) about the importance of interoperability for federated data repositories was observed. Conclusions: Implementing federated data repositories in the health field requires thorough understanding, knowledge, and collaboration, enabling translational medicine to reach its full potential. Understanding the needs of all involved parties can shape the success of medical data federation initiatives, with this study serving as a foundation for further research.<\/jats:p>","DOI":"10.3390\/data10110187","type":"journal-article","created":{"date-parts":[[2025,11,11]],"date-time":"2025-11-11T10:56:27Z","timestamp":1762858587000},"page":"187","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Perspectives on Research and Personalized Healthcare in the Context of Federated FAIR Data Based on an Exploratory Study by Medical Researchers"],"prefix":"10.3390","volume":"10","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6414-0841","authenticated-orcid":false,"given":"Elena","family":"Poenaru","sequence":"first","affiliation":[{"name":"Faculty of Medicine, \u201cCarol Davila\u201d University of Medicine and Pharmacy, 050474 Bucharest, Romania"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7672-086X","authenticated-orcid":false,"given":"Monica","family":"Dug\u0103e\u015fescu","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, \u201cCarol Davila\u201d University of Medicine and Pharmacy, 050474 Bucharest, Romania"},{"name":"Emergency University Hospital, 050098 Bucharest, Romania"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"C\u0103lin","family":"Poenaru","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, \u201cCarol Davila\u201d University of Medicine and Pharmacy, 050474 Bucharest, Romania"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Iulia","family":"Andrei-Bitere","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, \u201cCarol Davila\u201d University of Medicine and Pharmacy, 050474 Bucharest, Romania"},{"name":"Fundeni Clinical Institute, 022328 Bucharest, Romania"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3670-8361","authenticated-orcid":false,"given":"Livia-Cristiana","family":"B\u0103icoianu-Ni\u0163escu","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, \u201cCarol Davila\u201d University of Medicine and Pharmacy, 050474 Bucharest, Romania"},{"name":"\u201cElias\u201d University Emergency Hospital, 011461 Bucharest, Romania"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5075-9758","authenticated-orcid":false,"given":"Traian-Vasile","family":"Constantin","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, \u201cCarol Davila\u201d University of Medicine and Pharmacy, 050474 Bucharest, Romania"},{"name":"Prof. Dr. Theodor Burghele Clinical Hospital, 061344 Bucharest, Romania"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Aurelian","family":"Zugravu","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, \u201cCarol Davila\u201d University of Medicine and Pharmacy, 050474 Bucharest, Romania"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-5636-7046","authenticated-orcid":false,"given":"Brandusa","family":"Bitel","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, \u201cCarol Davila\u201d University of Medicine and Pharmacy, 050474 Bucharest, Romania"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maria Magdalena","family":"Constantin","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, \u201cCarol Davila\u201d University of Medicine and Pharmacy, 050474 Bucharest, Romania"},{"name":"Colentina Clinical Hospital, 021156 Bucharest, Romania"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Smaranda","family":"Stoleru","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, \u201cCarol Davila\u201d University of Medicine and Pharmacy, 050474 Bucharest, Romania"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1968","published-online":{"date-parts":[[2025,11,11]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"3","DOI":"10.3892\/br.2017.922","article-title":"Personalized medicine could transform healthcare","volume":"7","author":"Mathur","year":"2017","journal-title":"Biomed. Rep."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1186\/1877-6566-7-1","article-title":"An economic perspective on personalized medicine","volume":"7","author":"Jakka","year":"2013","journal-title":"HUGO J."},{"key":"ref_3","doi-asserted-by":"crossref","unstructured":"Badr, Y., Abdul Kader, L., and Shamayleh, A. (2024). The Use of Big Data in Personalized Healthcare to Reduce Inventory Waste and Optimize Patient Treatment. J. Pers. Med., 14.","DOI":"10.3390\/jpm14040383"},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"134","DOI":"10.1016\/j.csbj.2022.11.050","article-title":"A guide to multi-omics data collection and integration for translational medicine","volume":"21","author":"Athieniti","year":"2022","journal-title":"Comput. Struct. Biotechnol. J."},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"4","DOI":"10.1186\/2047-2501-2-4","article-title":"Traits and types of health data repositories","volume":"2","author":"Wade","year":"2014","journal-title":"Health Inf. Sci. Syst."},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"97","DOI":"10.1089\/bio.2017.0110","article-title":"Enhancing Reuse of Data and Biological Material in Medical Research: From FAIR to FAIR-Health","volume":"16","author":"Holub","year":"2018","journal-title":"Biopreserv. Biobank."},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"622","DOI":"10.1038\/s41597-024-03449-z","article-title":"Biomedical Data Repository Concepts and Management Principles","volume":"11","author":"Lin","year":"2024","journal-title":"Sci. Data"},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"giad115","DOI":"10.1093\/gigascience\/giad115","article-title":"A multi-omics data analysis workflow packaged as a FAIR Digital Object","volume":"13","author":"Niehues","year":"2024","journal-title":"Gigascience"},{"key":"ref_9","doi-asserted-by":"crossref","unstructured":"Mohr, A.E., Ortega-Santos, C.P., Whisner, C.M., Klein-Seetharaman, J., and Jasbi, P. (2024). Navigating Challenges and Opportunities in Multi-Omics Integration for Personalized Healthcare. Biomedicines, 12.","DOI":"10.3390\/biomedicines12071496"},{"key":"ref_10","doi-asserted-by":"crossref","unstructured":"Rujano, M.A., Boiten, J.W., Ohmann, C., Canham, S., Contrino, S., David, R., Ewbank, J., Filippone, C., Connellan, C., and Custers, I. (2024). Sharing sensitive data in life sciences: An overview of centralized and federated approaches. Brief. Bioinform., 25.","DOI":"10.1093\/bib\/bbae262"},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"160018","DOI":"10.1038\/sdata.2016.18","article-title":"The FAIR Guiding Principles for scientific data management and stewardship","volume":"3","author":"Wilkinson","year":"2016","journal-title":"Sci. Data"},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"855","DOI":"10.1016\/j.jval.2021.11.1357","article-title":"The Value of Federated Data Networks in Oncology: What Research Questions Do They Answer? Outcomes From a Systematic Literature Review","volume":"25","author":"Hunger","year":"2022","journal-title":"Value Health"},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"183","DOI":"10.1145\/96602.96604","article-title":"Federated database systems for managing distributed, heterogeneous, and autonomous databases","volume":"22","author":"Sheth","year":"1990","journal-title":"ACM Comput. Surv."},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"578","DOI":"10.1147\/sj.414.0578","article-title":"Data integration through database federation","volume":"41","author":"Haas","year":"2002","journal-title":"IBM Syst. J."},{"key":"ref_15","first-page":"107","article-title":"A systematic overview of data federation systems","volume":"15","author":"Gu","year":"2024","journal-title":"Semant. Web"},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"100032","DOI":"10.1016\/j.xgen.2021.100032","article-title":"International federation of genomic medicine databases using GA4GH standards","volume":"1","author":"Thorogood","year":"2021","journal-title":"Cell Genom."},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"1351","DOI":"10.1016\/j.compbiomed.2005.08.003","article-title":"Data mining and clinical data repositories: Insights from a 667,000 patient data set","volume":"36","author":"Mullins","year":"2006","journal-title":"Comput. Biol. Med."},{"key":"ref_18","doi-asserted-by":"crossref","unstructured":"De Maria Marchiano, R., Di Sante, G., Piro, G., Carbone, C., Tortora, G., Boldrini, L., Pietragalla, A., Daniele, G., Tredicine, M., and Cesario, A. (2021). Translational Research in the Era of Precision Medicine: Where We Are and Where We Will Go. J. Pers. Med., 11.","DOI":"10.3390\/jpm11030216"},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"1206","DOI":"10.1016\/S0140-6736(23)01575-1","article-title":"Equity, transparency, and accountability: Open science for the 21st century","volume":"402","author":"Winker","year":"2023","journal-title":"Lancet"},{"key":"ref_20","doi-asserted-by":"crossref","unstructured":"The Lancet (2018). Making sense of our digital medicine Babel. Lancet, 392, 1487.","DOI":"10.1016\/S0140-6736(18)32545-5"},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"936","DOI":"10.1093\/bib\/bbz044","article-title":"Implementing the FAIR Data Principles in precision oncology: Review of supporting initiatives","volume":"21","author":"Vesteghem","year":"2020","journal-title":"Brief. Bioinform."},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"8","DOI":"10.4274\/balkanmedj.2017.0966","article-title":"Patient Privacy in the Era of Big Data","volume":"35","author":"Kayaalp","year":"2018","journal-title":"Balkan Med. J."},{"key":"ref_23","doi-asserted-by":"crossref","first-page":"211","DOI":"10.1561\/0400000042","article-title":"The Algorithmic Foundations of Differential Privacy","volume":"9","author":"Dwork","year":"2014","journal-title":"Found. Trends Theor. Comput. Sci."},{"key":"ref_24","doi-asserted-by":"crossref","unstructured":"Murthy, S., Abu Bakar, A., Rahim, F.A., and Ramli, R. (2019, January 27\u201329). A Comparative Study of Data Anonymization Techniques. Proceedings of the IEEE 5th Intl Conference on Big Data Security on Cloud (BigDataSecurity), IEEE Intl Conference on High Performance and Smart Computing, (HPSC) and IEEE Intl Conference on Intelligent Data and Security (IDS), Washington, DC, USA.","DOI":"10.1109\/BigDataSecurity-HPSC-IDS.2019.00063"},{"key":"ref_25","doi-asserted-by":"crossref","unstructured":"Attieh, H.A., Haber, A., Wirth, F.N., Buchner, B., and Prasser, F. (2023). Enabling Open Science in Medicine Through Data Sharing: An Overview and Assessment of Common Approaches from the European Perspective. J. Open Access Law, 11.","DOI":"10.63567\/j7djwk68"},{"key":"ref_26","doi-asserted-by":"crossref","first-page":"79","DOI":"10.1038\/s41746-019-0158-1","article-title":"Why digital medicine depends on interoperability","volume":"2","author":"Lehne","year":"2019","journal-title":"npj Digit. Med."},{"key":"ref_27","doi-asserted-by":"crossref","first-page":"899","DOI":"10.1093\/jamia\/ocv189","article-title":"SMART on FHIR: A standards-based, interoperable apps platform for electronic health records","volume":"23","author":"Mandel","year":"2016","journal-title":"J. Am. Med. Inform. Assoc."},{"key":"ref_28","doi-asserted-by":"crossref","unstructured":"Benson, T., and Grieve, G. (2016). Principles of Health Interoperability: SNOMED CT, HL7 and FHIR, Springer. [3rd ed.].","DOI":"10.1007\/978-3-319-30370-3"},{"key":"ref_29","doi-asserted-by":"crossref","first-page":"624","DOI":"10.1373\/49.4.624","article-title":"LOINC, a universal standard for identifying laboratory observations: A 5-year update","volume":"49","author":"McDonald","year":"2003","journal-title":"Clin. Chem."},{"key":"ref_30","doi-asserted-by":"crossref","first-page":"R56","DOI":"10.1093\/hmg\/ddy114","article-title":"The next generation of precision medicine: Observational studies, electronic health records, biobanks and continuous monitoring","volume":"27","author":"Glicksberg","year":"2018","journal-title":"Hum. Mol. Genet."},{"key":"ref_31","doi-asserted-by":"crossref","first-page":"E840","DOI":"10.1016\/S2589-7500(23)00156-5","article-title":"Federated electronic health records for the European Health Data Space","volume":"5","author":"Raab","year":"2023","journal-title":"Lancet Digit. Health"},{"key":"ref_32","doi-asserted-by":"crossref","unstructured":"Bernier, A., Moln\u00e1r-G\u00e1bor, F., and Knoppers, B.M. (2022). The international data governance landscape. J. Law Biosci., 9.","DOI":"10.1093\/jlb\/lsac005"},{"key":"ref_33","doi-asserted-by":"crossref","unstructured":"Hoffmann, K., Pelz, A., Karg, E., Gottschalk, A., Zerjatke, T., Schuster, S., B\u00f6hme, H., Glauche, I., and Roeder, I. (2023). Data integration between clinical research and patient care: A framework for context-depending data sharing and in silico predictions. PLoS Digit. Health, 2.","DOI":"10.1371\/journal.pdig.0000140"},{"key":"ref_34","doi-asserted-by":"crossref","first-page":"e45013","DOI":"10.2196\/45013","article-title":"Initiatives, Concepts, and Implementation Practices of the Findable, Accessible, Interoperable, and Reusable Data Principles in Health Data Stewardship: Scoping Review","volume":"25","author":"Inau","year":"2023","journal-title":"J. Med. Internet Res."},{"key":"ref_35","doi-asserted-by":"crossref","unstructured":"Molla, G., and Bitew, M. (2024). Revolutionizing Personalized Medicine: Synergy with Multi-Omics Data Generation, Main Hurdles, and Future Perspectives. Biomedicines, 12.","DOI":"10.3390\/biomedicines12122750"},{"key":"ref_36","doi-asserted-by":"crossref","first-page":"75","DOI":"10.1007\/s12553-016-0127-5","article-title":"Patient privacy and security concerns on big data for personalized medicine","volume":"6","author":"Blobel","year":"2016","journal-title":"Health Technol."},{"key":"ref_37","doi-asserted-by":"crossref","unstructured":"Williamson, S.M., and Prybutok, V. (2024). Balancing Privacy and Progress: A Review of Privacy Challenges, Systemic Oversight, and Patient Perceptions in AI-Driven Healthcare. Appl. Sci., 14.","DOI":"10.3390\/app14020675"},{"key":"ref_38","unstructured":"(2024, November 29). World Economic Forum. Available online: https:\/\/www3.weforum.org\/docs\/WEF_Federated_Data_Systems_2019.pdf."},{"key":"ref_39","doi-asserted-by":"crossref","first-page":"100037","DOI":"10.1016\/j.xgen.2021.100037","article-title":"Partnerships to enable the responsible sharing of biomedical data","volume":"1","author":"Bahcall","year":"2021","journal-title":"Cell Genom."},{"key":"ref_40","doi-asserted-by":"crossref","first-page":"100029","DOI":"10.1016\/j.xgen.2021.100029","article-title":"International policies and standards for data sharing across genomic research and healthcare","volume":"1","author":"Rehm","year":"2021","journal-title":"Cell Genom."},{"key":"ref_41","unstructured":"Jiang, X., and Tang, H. (2020). Genomic data access policy models. Responsible Genomic Data Sharing\u2014Challenges and Approaches, Academic Press."},{"key":"ref_42","doi-asserted-by":"crossref","first-page":"e25120","DOI":"10.2196\/25120","article-title":"Revolutionizing Medical Data Sharing Using Advanced Privacy-Enhancing Technologies: Technical, Legal, and Ethical Synthesis","volume":"23","author":"Scheibner","year":"2021","journal-title":"J. Med. Internet Res."},{"key":"ref_43","doi-asserted-by":"crossref","first-page":"221","DOI":"10.1186\/s13690-021-00731-z","article-title":"InfAct Joint Action consortium. Coping with interoperability in the development of a federated research infrastructure: Achievements, challenges and recommendations from the JA-InfAct","volume":"79","author":"Palmieri","year":"2021","journal-title":"Arch. Public Health"},{"key":"ref_44","doi-asserted-by":"crossref","first-page":"10","DOI":"10.1162\/dint_r_00024","article-title":"FAIR Principles: Interpretations and Implementation Considerations","volume":"2","author":"Jacobsen","year":"2020","journal-title":"Data Intell."},{"key":"ref_45","unstructured":"(2024, November 12). European Genome-Phenome Archive. Available online: https:\/\/ega-archive.org\/about\/projects-and-funders\/federated-ega\/."},{"key":"ref_46","doi-asserted-by":"crossref","first-page":"309","DOI":"10.1007\/s11255-020-02606-8","article-title":"Genome-wide association study of nephrolithiasis in an Eastern European population","volume":"53","author":"Sima","year":"2021","journal-title":"Int. Urol. Nephrol."},{"key":"ref_47","doi-asserted-by":"crossref","first-page":"147","DOI":"10.4323\/rjlm.2021.147","article-title":"Considerations on the results evaluation of the genetic epidemiology training of AppGenEdu project","volume":"29","author":"Poenaru","year":"2021","journal-title":"Rom. J. Leg. Med."},{"key":"ref_48","doi-asserted-by":"crossref","unstructured":"Balan, A., Dugaesescu, M., Bejan, I., Brinduse, O., Bonciu, S., Ferdoschi, C., Iacob, D., and Poenaru, E. (2021, January 18\u201319). Lung Cancer Variants in Romanian Population\u2014A Genome-Wide Association Study. Proceedings of the 2021 International Conference on e-Health and Bioengineering (EHB), Iasi, Romania.","DOI":"10.1109\/EHB52898.2021.9657582"},{"key":"ref_49","doi-asserted-by":"crossref","unstructured":"Mateescu, L.A., Savu, A.P., Mutu, C.C., Vaida, C.D., \u0218erban, E.D., Bucur, \u0218., Poenaru, E., Nicolescu, A.C., and Constantin, M.M. (2024). The Intersection of Psoriasis and Neoplasia: Risk Factors, Therapeutic Approaches, and Management Strategies. Cancers, 16.","DOI":"10.3390\/cancers16244224"},{"key":"ref_50","doi-asserted-by":"crossref","unstructured":"Sandru, F., Poenaru, E., Stoleru, S., Radu, A.-M., Roman, A.-M., Ionescu, C., Zugravu, A., Nader, J.M., and Baicoianu-Nitescu, L.-C. (2025). Microbial Colonization and Antibiotic Resistance Profiles in Chronic Wounds: A Comparative Study of Hidradenitis Suppurativa and Venous Ulcers. Antibiotics, 14.","DOI":"10.3390\/antibiotics14010053"},{"key":"ref_51","doi-asserted-by":"crossref","unstructured":"Matei, A., Poenaru, E., Dimitriu, M.C.T., Zaharia, C., Ionescu, C.A., Navolan, D., and Furau, C.G. (2021). Obstetrical Soft Tissue Trauma during Spontaneous Vaginal Birth in the Romanian Adolescent Population\u2014Multicentric Comparative Study with Adult Population. Int. J. Environ. Res. Public Health, 18.","DOI":"10.3390\/ijerph182111491"},{"key":"ref_52","doi-asserted-by":"crossref","unstructured":"Cascini, F. (2025). Secondary Use of Electronic Health Data: Public Health Perspectives, Use Cases and Challenges, Springer Nature.","DOI":"10.1007\/978-3-031-88497-9"},{"key":"ref_53","doi-asserted-by":"crossref","unstructured":"Aitken, M., de St. Jorre, J., Pagliari, C., Jepson, R., and Cunningham-Burley, S. (2016). Public Responses to the Sharing and Linkage of Health Data for Research Purposes: A Systematic Review and Thematic Synthesis of Qualitative Studies. BMC Med. Ethics, 17.","DOI":"10.1186\/s12910-016-0153-x"},{"key":"ref_54","doi-asserted-by":"crossref","unstructured":"Gagnon, M.P., Attieh, R., Ghandour, E.K., L\u00e9gar\u00e9, F., Ouimet, M., Estabrooks, C.A., and Grimshaw, J. (2014). A Systematic Review of Instruments to Assess Organizational Readiness for Knowledge Translation in Health Care. PLoS ONE, 9.","DOI":"10.1371\/journal.pone.0114338"}],"container-title":["Data"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2306-5729\/10\/11\/187\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,11,11]],"date-time":"2025-11-11T11:29:05Z","timestamp":1762860545000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2306-5729\/10\/11\/187"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,11,11]]},"references-count":54,"journal-issue":{"issue":"11","published-online":{"date-parts":[[2025,11]]}},"alternative-id":["data10110187"],"URL":"https:\/\/doi.org\/10.3390\/data10110187","relation":{},"ISSN":["2306-5729"],"issn-type":[{"value":"2306-5729","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,11,11]]}}}