{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,29]],"date-time":"2026-10-29T20:39:41Z","timestamp":1793306381053,"version":"4.5.0"},"reference-count":131,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2025,5,1]],"date-time":"2025-05-01T00:00:00Z","timestamp":1746057600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"German Federal Ministry of Education and Research","award":["16KISA100K"],"award-info":[{"award-number":["16KISA100K"]}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["DIGITAL HEALTH"],"published-print":{"date-parts":[[2025,5]]},"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>The sharing of health data (HD) remains intensely debated, such as in the context of the European Health Data Space. While HD sharing has great potential, the factors influencing patients\u2019 willingness to share their HD remain unclear. Understanding patients\u2019 perspectives is crucial to enhancing their motivation to share their HD, both with healthcare providers (primary use [PU]) and for purposes unrelated to patient care (secondary use [SU]).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>This overview of systematic reviews (SRs) synthesizes and qualitatively appraises available research on factors affecting patients\u2019 willingness to share their digital HD for PU and SU.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>The MEDLINE, Embase, and Scopus literature databases were searched in June 2023, complemented by additional searches, to identify SRs focusing on the determinants of patients\u2019 willingness to share HD published from 2013 to 2023. SRs underwent a multistage screening process using the inclusion and exclusion criteria based on the Population, Concept\/Construct, and Context (PCC) framework, followed by data extraction and quality assessment using revised measurement tool to assess systematic reviews (R-AMSTAR2). Factors were categorized through a combined deductive-inductive thematic coding process, considering theories on HD sharing and technology acceptance.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Eleven SRs published between 2014 and 2021 were included, encompassing 321 articles with diverse study designs. Forty-one influencing factors (labeled as facilitators, barriers and inconsistent for unclassifiable factors) were identified and grouped into 15 main categories: 22 facilitators, nine barriers, and four inconsistent factors for PU and 13 facilitators, six barriers, and six inconsistent factors for SU. The key facilitators for PU and SU included higher education, trust, confidentiality, and transparency. The major barriers for PU and SU were privacy and security concerns. The R-AMSTAR2 overall confidence rating of all SRs was critically low.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Our findings highlight modifiable and nonmodifiable factors affecting patients\u2019 willingness to share their HD. Policymakers and healthcare providers should focus on modifiable factors such as individual usefulness, public benefit, and privacy and security concerns. High-quality SRs are urgently needed to provide reliable recommendations and to develop a holistic, practical framework.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Protocol registration number<\/jats:title>\n                    <jats:p>CRD42023429302<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/20552076251340254","type":"journal-article","created":{"date-parts":[[2025,8,12]],"date-time":"2025-08-12T07:49:25Z","timestamp":1754984965000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":9,"title":["Factors influencing patients\u2019 willingness to share their digital health data for primary and secondary use: A theory- and evidence-based overview of reviews"],"prefix":"10.1177","volume":"11","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4334-2804","authenticated-orcid":false,"given":"Sabrina","family":"Fesl","sequence":"first","affiliation":[{"name":"Center for Evidence-Based Healthcare, Medical Faculty and University Hospital Carl Gustav Carus, TUD Dresden University of Technology, Dresden, Saxony, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2747-4559","authenticated-orcid":false,"given":"Caroline","family":"Lang","sequence":"additional","affiliation":[{"name":"Center for Evidence-Based Healthcare, Medical Faculty and University Hospital Carl Gustav Carus, TUD Dresden University of Technology, Dresden, Saxony, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0264-0960","authenticated-orcid":false,"given":"Jochen","family":"Schmitt","sequence":"additional","affiliation":[{"name":"Center for Evidence-Based Healthcare, Medical Faculty and University Hospital Carl Gustav Carus, TUD Dresden University of Technology, Dresden, Saxony, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0005-8393-6879","authenticated-orcid":false,"given":"Stefanie","family":"Br\u00fcckner","sequence":"additional","affiliation":[{"name":"Else Kr\u00f6ner Fresenius Center for Digital Health, TUD Dresden University of Technology, Dresden, Saxony, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1997-1689","authenticated-orcid":false,"given":"Stephen","family":"Gilbert","sequence":"additional","affiliation":[{"name":"Else Kr\u00f6ner Fresenius Center for Digital Health, TUD Dresden University of Technology, Dresden, Saxony, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4889-3632","authenticated-orcid":false,"given":"Stefanie","family":"Deckert","sequence":"additional","affiliation":[{"name":"Center for Evidence-Based Healthcare, Medical Faculty and University Hospital Carl Gustav Carus, TUD Dresden University of Technology, Dresden, Saxony, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8292-7675","authenticated-orcid":false,"given":"Madlen","family":"Scheibe","sequence":"additional","affiliation":[{"name":"Center for Evidence-Based Healthcare, Medical Faculty and University Hospital Carl Gustav Carus, TUD Dresden University of Technology, Dresden, Saxony, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2025,6,30]]},"reference":[{"key":"e_1_3_2_2_2","unstructured":"European Commission. Directive 2011\/24\/EU of the European Parliament and of the Council of 9 March 2011 on the application of patients\u2019 rights in cross-border healthcare https:\/\/www.eumonitor.eu\/9353000\/1\/j9vvik7m1c3gyxp\/vioaz2lmfc58 (2011 accessed 3 July 2024)."},{"key":"e_1_3_2_3_2","doi-asserted-by":"publisher","DOI":"10.1186\/s13690-023-01182-4"},{"key":"e_1_3_2_4_2","unstructured":"European Commission. Proposal for a regulation of the European Parliament and of the Council on the European Health https:\/\/www.european-health-data-space.com\/European_Health_Data_Space_Article_2_(Proposal_3.5.2022).html (2022 assessed 3 July 2024)."},{"key":"e_1_3_2_5_2","article-title":"Federated electronic health records for the European health data space","volume":"5","author":"Raab R","year":"2023","unstructured":"Raab R, K\u00fcderle A, Zakreuskaya A, et al. Federated electronic health records for the European health data space. Lancet Digit Healt 2023; 5: e840\u2013e847.","journal-title":"Lancet Digit Healt"},{"key":"e_1_3_2_6_2","doi-asserted-by":"publisher","DOI":"10.2147\/RMHP.S179259"},{"key":"e_1_3_2_7_2","doi-asserted-by":"publisher","DOI":"10.1038\/s41746-023-00891-y"},{"key":"e_1_3_2_8_2","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.2238"},{"key":"e_1_3_2_9_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.healthpol.2018.05.014"},{"key":"e_1_3_2_10_2","first-page":"384","article-title":"Big data in healthcare - the promises, challenges and opportunities from a research perspective: a case study with a model database","volume":"2017","author":"Adibuzzaman M","year":"2017","unstructured":"Adibuzzaman M, DeLaurentis P, Hill J, et al. Big data in healthcare - the promises, challenges and opportunities from a research perspective: a case study with a model database. AMIA Annu Symp Proc 2017; 2017: 384\u2013392.","journal-title":"AMIA Annu Symp Proc"},{"key":"e_1_3_2_11_2","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2016-011784"},{"key":"e_1_3_2_12_2","first-page":"48","volume-title":"Health data sharing to support better outcomes: building a foundation of stakeholder trust","author":"Carman KL","year":"2021","unstructured":"Carman KL, Grossmann C, Zirkle M, et al. National academy of medicine and the learning health system series. In: Health data sharing to support better outcomes: building a foundation of stakeholder trust. Washington, DC: National Academies Press (US), 2021, pp.48."},{"key":"e_1_3_2_13_2","doi-asserted-by":"publisher","DOI":"10.2307\/30036540"},{"key":"e_1_3_2_14_2","doi-asserted-by":"publisher","DOI":"10.2196\/30214"},{"key":"e_1_3_2_15_2","doi-asserted-by":"publisher","DOI":"10.2307\/41410412"},{"key":"e_1_3_2_16_2","volume-title":"Diffusion of innovations","author":"Rogers EM","year":"2003","unstructured":"Rogers EM. Diffusion of innovations. 5th ed. New York: Free Press, 2003.","edition":"5"},{"key":"e_1_3_2_17_2","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.2278"},{"key":"e_1_3_2_18_2","volume-title":"Understanding attitudes and predicting social behavior","author":"Ajzen I","year":"1980","unstructured":"Ajzen I, Fishbein M. Understanding attitudes and predicting social behavior. Pbk ed. N.J.: Prentice-Hall, Englewood Cliffs, 1980."},{"key":"e_1_3_2_19_2","doi-asserted-by":"publisher","DOI":"10.1016\/0749-5978(91)90020-T"},{"key":"e_1_3_2_20_2","doi-asserted-by":"publisher","DOI":"10.1287\/mnsc.35.8.982"},{"key":"e_1_3_2_21_2","unstructured":"Davis F. A Technology Acceptance Model for empirically testing new end-user information systems: theory and results. PhD Thesis Massachusetts Institute of Technology Sloan School of Management USA 1985."},{"key":"e_1_3_2_22_2","doi-asserted-by":"publisher","DOI":"10.1108\/ITP-07-2016-0160"},{"key":"e_1_3_2_23_2","first-page":"73","article-title":"Intention to use a personal health record: a theoretical analysis using the technology acceptance model","volume":"14","author":"Noblin A","year":"2013","unstructured":"Noblin A, Wan T, Fottler M. Intention to use a personal health record: a theoretical analysis using the technology acceptance model. Int J Healthc Technol Manage 2013; 14: 73\u201389.","journal-title":"Int J Healthc Technol Manage"},{"key":"e_1_3_2_24_2","doi-asserted-by":"publisher","DOI":"10.1287\/mnsc.46.2.186.11926"},{"key":"e_1_3_2_25_2","doi-asserted-by":"publisher","DOI":"10.2307\/20650309"},{"key":"e_1_3_2_26_2","doi-asserted-by":"crossref","unstructured":"Samhan B Joshi KD. Resistance of Healthcare Information Technologies; Literature Review Analysis and Gaps. In: 2015 Proceedings of the 48th Hawaii International Conference on System Sciences (HICSS) Kauai Hawaii USA 5\u20138 January 2015 pp.2992\u20133001.","DOI":"10.1109\/HICSS.2015.362"},{"key":"e_1_3_2_27_2","first-page":"37","article-title":"Understanding user resistance to information technology in healthcare: the nature and role of perceived threats","volume":"3","author":"Ngafeeson MN","unstructured":"Ngafeeson MN. Understanding user resistance to information technology in healthcare: the nature and role of perceived threats. Trans Int Conf Health 2015, 56(3): 37\u201349.","journal-title":"Trans Int Conf Health 2015, 56"},{"key":"e_1_3_2_28_2","doi-asserted-by":"publisher","DOI":"10.17705\/1atrr.00043"},{"key":"e_1_3_2_29_2","doi-asserted-by":"publisher","DOI":"10.4018\/IJHISI.2017100105"},{"key":"e_1_3_2_30_2","doi-asserted-by":"crossref","unstructured":"Samhan B. Patients\u2019 Resistance towards Health Information Technology A Perspective of the Dual Factor Model of IT Usage. In: Proceedings of the 50th Hawaii International Conference on System Sciences (HICSS) Kauai Hawaii USA 4\u20137 January 2017 pp.3401\u20133410.","DOI":"10.24251\/HICSS.2017.412"},{"key":"e_1_3_2_31_2","doi-asserted-by":"publisher","DOI":"10.2307\/249477"},{"key":"e_1_3_2_32_2","first-page":"1","article-title":"German Translation of the concerns for information privacy (CFIP) construct","volume":"3112207","author":"Harborth D","year":"2018","unstructured":"Harborth D, Pape S. German Translation of the concerns for information privacy (CFIP) construct. SSRN Electronic J 2018; 3112207: 1\u201312.","journal-title":"SSRN Electronic J"},{"key":"e_1_3_2_33_2","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-319-23294-2_2"},{"key":"e_1_3_2_34_2","doi-asserted-by":"publisher","DOI":"10.2307\/20650295"},{"key":"e_1_3_2_35_2","first-page":"1","article-title":"Overcoming personal barriers to adoption when technology enables information to be available to others","volume":"06","author":"Angst C","year":"2006","unstructured":"Angst C, Agarwal R. Overcoming personal barriers to adoption when technology enables information to be available to others. SSRN Electronic J 2006; 06-033: 1\u201321.","journal-title":"SSRN Electronic J"},{"key":"e_1_3_2_36_2","doi-asserted-by":"publisher","DOI":"10.1007\/s10916-012-9851-1"},{"key":"e_1_3_2_37_2","doi-asserted-by":"publisher","DOI":"10.1002\/asi.23068"},{"key":"e_1_3_2_38_2","doi-asserted-by":"publisher","DOI":"10.1287\/isre.1040.0032"},{"key":"e_1_3_2_39_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijinfomgt.2016.04.015"},{"key":"e_1_3_2_40_2","doi-asserted-by":"publisher","DOI":"10.25300\/MISQ\/2013\/37.1.12"},{"key":"e_1_3_2_41_2","doi-asserted-by":"publisher","DOI":"10.1111\/isj.12179"},{"key":"e_1_3_2_42_2","doi-asserted-by":"publisher","DOI":"10.1177\/1355819617751555"},{"key":"e_1_3_2_43_2","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2288-13-72"},{"key":"e_1_3_2_44_2","first-page":"1","article-title":"Public attitudes to sharing government data with private industry: a systematic scoping review","volume":"2022","author":"Jackie S","year":"2022","unstructured":"Jackie S, Stacy C, Belinda F, et al. Public attitudes to sharing government data with private industry: a systematic scoping review. medRxiv 2022; 2022-06: 1\u201333.","journal-title":"medRxiv"},{"key":"e_1_3_2_45_2","doi-asserted-by":"publisher","DOI":"10.1007\/s10916-022-01875-3"},{"key":"e_1_3_2_46_2","first-page":"1368","article-title":"Trust, security and public interest: striking the balance: a narrative review of previous literature on public attitudes towards the sharing, linking and use of administrative data for research","volume":"5","author":"Waind E","year":"2020","unstructured":"Waind E. Trust, security and public interest: striking the balance: a narrative review of previous literature on public attitudes towards the sharing, linking and use of administrative data for research. Int J Popul Data Sci 2020; 5: 1368.","journal-title":"Int J Popul Data Sci"},{"key":"e_1_3_2_47_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12911-017-0436-2"},{"key":"e_1_3_2_48_2","doi-asserted-by":"publisher","DOI":"10.2196\/42507"},{"key":"e_1_3_2_49_2","doi-asserted-by":"publisher","DOI":"10.2196\/42131"},{"key":"e_1_3_2_50_2","article-title":"Reporting guideline for overviews of reviews of healthcare interventions: development of the PRIOR statement","volume":"378","author":"Gates M","year":"2022","unstructured":"Gates M, Gates A, Pieper D, et al. Reporting guideline for overviews of reviews of healthcare interventions: development of the PRIOR statement. Br Med J 2022; 378: e070849.","journal-title":"Br Med J"},{"key":"e_1_3_2_51_2","doi-asserted-by":"publisher","DOI":"10.1097\/XEB.0000000000000055"},{"key":"e_1_3_2_52_2","first-page":"1","article-title":"Navigieren im Dschungel \u2013 Empfehlungen zur Auswahl der Fachdatenbanken f\u00fcr eine systematische Literaturrecherche \/ Navigating in the jungle \u2013 recommendations for selecting databases for systematic literature searching. GMS Medizin \u2013 Bibliothek \u2013 Information 2020","volume":"20","author":"Nordhausen T","year":"2020","unstructured":"Nordhausen T, Hirt J. Navigieren im Dschungel \u2013 Empfehlungen zur Auswahl der Fachdatenbanken f\u00fcr eine systematische Literaturrecherche \/ Navigating in the jungle \u2013 recommendations for selecting databases for systematic literature searching. GMS Medizin \u2013 Bibliothek \u2013 Information 2020. Evidenzbasierte Medizin und Systematic Rev 2020; 20: 1\u20135.","journal-title":"Evidenzbasierte Medizin und Systematic Rev"},{"key":"e_1_3_2_53_2","doi-asserted-by":"publisher","DOI":"10.1186\/s13643-016-0384-4"},{"key":"e_1_3_2_54_2","volume-title":"Statistical methods for rates and proportions","author":"Fleiss JL","year":"1981","unstructured":"Fleiss JL. Statistical methods for rates and proportions. 2nd ed. New York: Wiley, John and Sons, Incorporated, 1981.","edition":"2"},{"key":"e_1_3_2_55_2","article-title":"AMSTAR 2: A critical appraisal tool for systematic reviews that include randomised or non-randomised studies of healthcare interventions, or both","volume":"358","author":"Shea BJ","year":"2017","unstructured":"Shea BJ, Reeves BC, Wells G, et al. AMSTAR 2: A critical appraisal tool for systematic reviews that include randomised or non-randomised studies of healthcare interventions, or both. Br Med J 2017; 358: j4008.","journal-title":"Br Med J"},{"key":"e_1_3_2_56_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijmedinf.2012.10.007"},{"key":"e_1_3_2_57_2","doi-asserted-by":"publisher","DOI":"10.1097\/CIN.0000000000000682"},{"key":"e_1_3_2_58_2","doi-asserted-by":"publisher","DOI":"10.7326\/0003-4819-159-10-201311190-00006"},{"key":"e_1_3_2_59_2","first-page":"418","article-title":"Patient portal use by adults with heart failure","volume":"39","author":"Kallmerten PS","year":"2021","unstructured":"Kallmerten PS, Chia LR, Jakub K, et al. Patient portal use by adults with heart failure. Integrative Rev Comput, Inform, Nursing:CIN 2021; 39: 418\u2013431.","journal-title":"Integrative Rev Comput, Inform, Nursing:CIN"},{"key":"e_1_3_2_60_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijmedinf.2014.06.011"},{"key":"e_1_3_2_61_2","doi-asserted-by":"publisher","DOI":"10.7326\/M14-0877"},{"key":"e_1_3_2_62_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.apergo.2015.10.010"},{"key":"e_1_3_2_63_2","doi-asserted-by":"publisher","DOI":"10.1080\/17538157.2021.1929998"},{"key":"e_1_3_2_64_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijmedinf.2019.03.014"},{"key":"e_1_3_2_65_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12910-016-0153-x"},{"key":"e_1_3_2_66_2","doi-asserted-by":"publisher","DOI":"10.1089\/dia.2014.0078"},{"key":"e_1_3_2_67_2","doi-asserted-by":"publisher","DOI":"10.2196\/12779"},{"key":"e_1_3_2_68_2","doi-asserted-by":"publisher","DOI":"10.1186\/s13643-020-01481-9"},{"key":"e_1_3_2_69_2","doi-asserted-by":"publisher","DOI":"10.1186\/s13643-021-01663-z"},{"key":"e_1_3_2_70_2","article-title":"Patients\u2019 online access to their electronic health records and linked online services: a systematic review in primary care","volume":"65","author":"Mold F","year":"2015","unstructured":"Mold F, De Lusignan S, Sheikh A, et al. Patients\u2019 online access to their electronic health records and linked online services: a systematic review in primary care. Br J General Pract 2015; 65: e141\u2013e151.","journal-title":"Br J General Pract"},{"key":"e_1_3_2_71_2","article-title":"The impact of patient online access to computerized medical records and services on type 2 diabetes: systematic review","volume":"20","author":"Mold F","year":"2018","unstructured":"Mold F, Raleigh M, Alharbi NS, et al. The impact of patient online access to computerized medical records and services on type 2 diabetes: systematic review. J Med Internet Res 2018; 20: e235.","journal-title":"J Med Internet Res"},{"key":"e_1_3_2_72_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.hlpt.2017.01.001"},{"key":"e_1_3_2_73_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12911-016-0359-3"},{"key":"e_1_3_2_74_2","doi-asserted-by":"publisher","DOI":"10.12688\/wellcomeopenres.13531.2"},{"key":"e_1_3_2_75_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijmedinf.2014.08.002"},{"key":"e_1_3_2_76_2","doi-asserted-by":"publisher","DOI":"10.1089\/dia.2019.0074"},{"key":"e_1_3_2_77_2","doi-asserted-by":"publisher","DOI":"10.2196\/33356"},{"key":"e_1_3_2_78_2","doi-asserted-by":"publisher","DOI":"10.2196\/11199"},{"key":"e_1_3_2_79_2","doi-asserted-by":"publisher","DOI":"10.1097\/CIN.0000000000000377"},{"key":"e_1_3_2_80_2","doi-asserted-by":"publisher","DOI":"10.1378\/chest.14-2559"},{"key":"e_1_3_2_81_2","doi-asserted-by":"publisher","DOI":"10.2196\/ijmr.4245"},{"key":"e_1_3_2_82_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1369-7625.2012.00799.x"},{"key":"e_1_3_2_83_2","doi-asserted-by":"publisher","DOI":"10.1197\/jamia.M1147"},{"key":"e_1_3_2_84_2","first-page":"26","article-title":"E-health in Australia and elsewhere: a comparison and lessons for the near future","volume":"188","author":"Gajanayake R","year":"2013","unstructured":"Gajanayake R, Sahama T, Iannella R. E-health in Australia and elsewhere: a comparison and lessons for the near future. Stud Health Technol Inform 2013; 188: 26\u201332.","journal-title":"Stud Health Technol Inform"},{"key":"e_1_3_2_85_2","doi-asserted-by":"publisher","DOI":"10.2196\/medinform.8092"},{"key":"e_1_3_2_86_2","first-page":"146","article-title":"Consumer perspectives on MyHealth record: a review","volume":"239","author":"Van Kasteren Y","year":"2017","unstructured":"Van Kasteren Y, Maeder A, Williams PA, et al. Consumer perspectives on MyHealth record: a review. Stud Health Technol Inform 2017; 239: 146\u2013152.","journal-title":"Stud Health Technol Inform"},{"key":"e_1_3_2_87_2","doi-asserted-by":"publisher","DOI":"10.1197\/jamia.M1593"},{"key":"e_1_3_2_88_2","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.3703"},{"key":"e_1_3_2_89_2","first-page":"410","article-title":"Linking the health data system in the U.S.: challenges to the benefits","volume":"4","author":"Wu H","year":"2017","unstructured":"Wu H, LaRue EM. Linking the health data system in the U.S.: challenges to the benefits. Int J Nurs Sci 2017; 4: 410\u2013417.","journal-title":"Int J Nurs Sci"},{"key":"e_1_3_2_90_2","doi-asserted-by":"publisher","DOI":"10.2196\/11604"},{"key":"e_1_3_2_91_2","doi-asserted-by":"publisher","DOI":"10.1006\/ijhc.2001.0503"},{"key":"e_1_3_2_92_2","doi-asserted-by":"publisher","DOI":"10.1007\/s11606-014-2822-0"},{"key":"e_1_3_2_93_2","doi-asserted-by":"publisher","DOI":"10.1093\/jamia\/ocv025"},{"key":"e_1_3_2_94_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijmedinf.2019.01.014"},{"key":"e_1_3_2_95_2","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.5876"},{"key":"e_1_3_2_96_2","first-page":"1c","article-title":"Diffusion and use of tethered personal health records in primary care","volume":"12","author":"Vydra TP","year":"2015","unstructured":"Vydra TP, Cuaresma E, Kretovics M, et al. Diffusion and use of tethered personal health records in primary care. Perspect Health Inf Manag 2015; 12: 1c.","journal-title":"Perspect Health Inf Manag"},{"key":"e_1_3_2_97_2","unstructured":"Garets D Davis M. Electronic Medical Records vs. Electronic Health Records: Yes There Is a Difference. Policy white paper. Chicago HIMSS Analytics \u2122 2006 1. Jg."},{"key":"e_1_3_2_98_2","first-page":"1","volume-title":"Proceedings of the Thirty Fourth International Conference on Information Systems","author":"Gebauer L","year":"2013","unstructured":"Gebauer L, S\u00f6llner M, Leimeister JM. Towards understanding the formation of continuous IT use. In: Proceedings of the Thirty Fourth International Conference on Information Systems. Milano, Italy, 2013, pp.1\u201317."},{"key":"e_1_3_2_99_2","doi-asserted-by":"publisher","DOI":"10.2307\/3250921"},{"key":"e_1_3_2_100_2","unstructured":"The European Parliament and the Council of the European Union. Regulation (EU) 2016\/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data and repealing Directive 95\/46\/EC (General Data Protection Regulation) https:\/\/eur-lex.europa.eu\/eli\/reg\/2016\/679\/oj\/eng (2016 accessed 28 March 2025)."},{"key":"e_1_3_2_101_2","unstructured":"Europ\u00e4ische Kommission. Mitteilung der Kommission an das Europ\u00e4ische Parlament und den Rat Datenschutz als Grundpfeiler der Teilhabe der B\u00fcrgerinnen und B\u00fcrger und des Ansatzes der EU f\u00fcr den digitalen Wandel \u2013 zwei Jahre Anwendung der Datenschutz-Grundverordnung https:\/\/eur-lex.europa.eu\/legal-content\/de\/ALL\/?uri=CELEX:52020DC0264 (2020 accessed 28 March 2025)."},{"key":"e_1_3_2_102_2","doi-asserted-by":"publisher","DOI":"10.21037\/mhealth-23-18"},{"key":"e_1_3_2_103_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12910-021-00647-x"},{"key":"e_1_3_2_104_2","unstructured":"European Commission. European Health Data Space Regulation https:\/\/health.ec.europa.eu\/ehealth-digital-health-and-care\/european-health-data-space-regulation-ehds_en (2025 accessed 28 March 2025)."},{"key":"e_1_3_2_105_2","doi-asserted-by":"publisher","DOI":"10.3390\/healthcare10091629"},{"key":"e_1_3_2_106_2","unstructured":"Richards R Raven-Adams M Maddocks J et al. Sharing health data-lessons for the UK from the European Health Data Space. Report NHS Confederation and Wellcome Sanger Institute UK March 2024."},{"key":"e_1_3_2_107_2","first-page":"7948","article-title":"NHS Digitrials: how the search for COVID-19 treatments is revolutionising clinical trials","volume":"306","author":"Pinches H","year":"2021","unstructured":"Pinches H. NHS Digitrials: how the search for COVID-19 treatments is revolutionising clinical trials. Pharm J 2021; 306: 7948.","journal-title":"Pharm J"},{"key":"e_1_3_2_108_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(14)60594-8"},{"key":"e_1_3_2_109_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2024.116824"},{"key":"e_1_3_2_110_2","doi-asserted-by":"publisher","DOI":"10.1093\/jamia\/ocw012"},{"key":"e_1_3_2_111_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.puhe.2017.05.001"},{"key":"e_1_3_2_112_2","first-page":"589","article-title":"Over 89% adoption rate of the nationwide online patient portal in Finland","volume":"294","author":"Jormanainen V","year":"2022","unstructured":"Jormanainen V. Over 89% adoption rate of the nationwide online patient portal in Finland. Stud Health Technol Inform 2022; 294: 589\u2013593.","journal-title":"Stud Health Technol Inform"},{"key":"e_1_3_2_113_2","first-page":"336","article-title":"Timing it right \u2013 patients\u2019 online access to their record notes in Sweden","volume":"247","author":"H\u00e4gglund M","year":"2018","unstructured":"H\u00e4gglund M, Moll J, \u00c5hlfeldt RM, et al. Timing it right \u2013 patients\u2019 online access to their record notes in Sweden. Stud Health Technol Inform 2018; 247: 336\u2013340.","journal-title":"Stud Health Technol Inform"},{"key":"e_1_3_2_114_2","doi-asserted-by":"publisher","DOI":"10.2196\/24927"},{"key":"e_1_3_2_115_2","doi-asserted-by":"publisher","DOI":"10.2196\/49084"},{"issue":"11","key":"e_1_3_2_116_2","first-page":"565","article-title":"Patient-Perceived facilitators of and barriers to electronic portal use: a systematic review","volume":"35","author":"Powell KR","year":"2017","unstructured":"Powell KR. Patient-Perceived facilitators of and barriers to electronic portal use: a systematic review. Comp Infor Nurs: CIN 2017; 35(11): 565\u2013573.","journal-title":"Comp Infor Nurs: CIN"},{"key":"e_1_3_2_117_2","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.2589"},{"key":"e_1_3_2_118_2","unstructured":"Pharmazeutische Zeitung. Vielen B\u00fcrgern ist E-Akte nicht bekannt https:\/\/www.pharmazeutische-zeitung.de\/vielen-buergern-ist-e-akte-nicht-bekannt-138993\/ (2023 accessed 28 May 2024)."},{"key":"e_1_3_2_119_2","unstructured":"Gematik. TI-Dashboard - Digitalisierung in der \u00dcbersicht https:\/\/www.gematik.de\/telematikinfrastruktur\/ti-dashboard (2023 accessed 28 May 2024)."},{"key":"e_1_3_2_120_2","unstructured":"Weisband YSA Thun S Balicer R. GIHF-AI Study 2023: trust in the use of health data https:\/\/gihf-ai.eu\/en\/study\/gihf-ai-study-2023-trust-in-the-use-of-health-data\/ (2024 accessed 1 July 2024)."},{"key":"e_1_3_2_121_2","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2018.5630"},{"key":"e_1_3_2_122_2","doi-asserted-by":"publisher","DOI":"10.2967\/jnmt.119.227819"},{"key":"e_1_3_2_123_2","first-page":"579","article-title":"The inadequacy of HIPAA's privacy rule: the plain language notice of privacy practices and patient understanding","volume":"60","author":"Pollio MC","year":"2004","unstructured":"Pollio MC. The inadequacy of HIPAA's privacy rule: the plain language notice of privacy practices and patient understanding. NYU Ann Surv Am L 2004; 60: 579.","journal-title":"NYU Ann Surv Am L"},{"key":"e_1_3_2_124_2","doi-asserted-by":"publisher","DOI":"10.1055\/a-2432-0329"},{"key":"e_1_3_2_125_2","unstructured":"HealthIT.gov. TEFCA https:\/\/www.healthit.gov\/topic\/interoperability\/policy\/trusted-exchange-framework-and-common-agreement-tefca (2024 accessed 31 March 2025)."},{"key":"e_1_3_2_126_2","doi-asserted-by":"publisher","DOI":"10.1111\/hex.12240"},{"key":"e_1_3_2_127_2","first-page":"614","article-title":"Theoretical foundations for evidence-based health informatics: why? How?","volume":"228","author":"Scott PJ","year":"2016","unstructured":"Scott PJ, Georgiou A, Hypp\u00f6nen H, et al. Theoretical foundations for evidence-based health informatics: why? How? Stud Health Technol Inform 2016; 228: 614\u2013618.","journal-title":"Stud Health Technol Inform"},{"key":"e_1_3_2_128_2","doi-asserted-by":"publisher","DOI":"10.2196\/medinform.5021"},{"key":"e_1_3_2_129_2","first-page":"1","article-title":"Improving the science of health informatics by using validated instruments and outcome measures","author":"Scott PJ","year":"2014","unstructured":"Scott PJ, Brown AW, Friedman CP, et al. Improving the science of health informatics by using validated instruments and outcome measures. Med Inform Europe 2014: 1\u20133.","journal-title":"Med Inform Europe"},{"key":"e_1_3_2_130_2","doi-asserted-by":"publisher","DOI":"10.7861\/clinmedicine.2-3-227"},{"key":"e_1_3_2_131_2","unstructured":"Bundesministerium f\u00fcr Gesundheit. Gesetz zur verbesserten Nutzung von Gesundheitsdaten https:\/\/www.recht.bund.de\/eli\/bund\/bgbl-1\/2024\/102 (2024 accessed 3 July 2024)."},{"key":"e_1_3_2_132_2","first-page":"1106","article-title":"Effects of adult patient portals on patient empowerment and health-related outcomes: a systematic review","volume":"264","author":"Ammenwerth E","year":"2019","unstructured":"Ammenwerth E, Hoerbst A, Lannig S, et al. Effects of adult patient portals on patient empowerment and health-related outcomes: a systematic review. Stud Health Technol Inform 2019; 264: 1106\u20131110.","journal-title":"Stud Health Technol Inform"}],"container-title":["DIGITAL HEALTH"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/20552076251340254","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/20552076251340254","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/20552076251340254","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,28]],"date-time":"2026-04-28T17:52:03Z","timestamp":1777398723000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/20552076251340254"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,5]]},"references-count":131,"alternative-id":["10.1177\/20552076251340254"],"URL":"https:\/\/doi.org\/10.1177\/20552076251340254","relation":{},"ISSN":["2055-2076","2055-2076"],"issn-type":[{"value":"2055-2076","type":"print"},{"value":"2055-2076","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,5]]},"article-number":"20552076251340254"}}