Dữ liệu cứu sống: Tối ưu hóa dữ liệu lâm sàng thu thập định kỳ cho nghiên cứu bệnh hiếm

Wang CJ, Ng CY, Brook RH. Response to COVID-19 in Taiwan: big data analytics, new technology, and proactive testing. JAMA. 2020;323(14):1341–2. Hollander JE, Carr BG. Virtually perfect? Telemedicine for Covid-19. N Engl J Med. 2020;382(18):1679–81. Ohannessian R, Duong TA, Odone A. Global telemedicine implementation and integration within health systems to fight the COVID-19 pandemic: a call to action. JMIR Public Health Surveill. 2020;6(2):e18810. Ford I, Norrie J. Pragmatic trials. N Engl J Med. 2016;375(5):454–63. Nguengang Wakap S, Lambert DM, Olry A, Rodwell C, Gueydan C, Lanneau V, et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. Eur J Hum Genet. 2020;28:165–73. Horgan D, Bernini C, Thomas PPM, Morre SA. Cooperating on data: the missing element in bringing real innovation to Europe’s healthcare systems. Public Health Genomics. 2019;22(3–4):77–101. Matthews L, Chin V, Taliangis M, Samanek A, Baynam G. Childhood rare diseases and the UN convention on the rights of the child. Orphanet J Rare Dis. 2021;16:523. The Office of the National Coordinator for Health Information Technology. Strategy on Reducing Regulatory and Administrative Burden Relating to the Use of Health IT and EHRs. Final Report. 2020 (https://www.healthit.gov/sites/default/files/page/2020-02/BurdenReport_0.pdf) Accessed 13th Dec 2022. Blumenthal D, Tavenner M. The, “meaningful use” regulation for electronic health records. N Engl J Med. 2010;363(6):501–4. Wachter RM. Making IT Work: Harnessing the Power of Health Information Technology to Improve Care in England. 2016. (https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/550866/Wachter_Review_Accessible.pdf) Accessed 13th Dec 2022. Priestman W, Sridharan S, Vigne H, Collins R, Seamer L, Sebire NJ. What to expect from electronic patient record system implementation; lessons learned from published evidence. J Innov Health Inform. 2018;25(2):92–104. Topol E. The Topol review: Preparing the healthcare workforce to deliver the digital future. 2019. (https://topol.hee.nhs.uk/) Accessed 13th Dec 2022. Goldacre B, Bardsley M, Benson T, Cheema K, Chinn R, Coughlan E, et al. Bringing NHS data analysis into the 21st century. J R Soc Med. 2020;113(10):383–8. Ambrosini A, Calabrese D, Avato FM, Catania F, Cavaletti G, Pera MC, et al. The Italian neuromuscular registry: a coordinated platform where patient organizations and clinicians collaborate for data collection and multiple usage. Orphanet J Rare Dis. 2018;13:176. https://doi.org/10.1186/s13023-018-0918-z. Berger A, Rustemeier AK, Göbel J, Kadioglu D, Britz V, Schubert K, et al. How to design a registry for undiagnosed patients in the framework of rare disease diagnosis: suggestions on software, data set and coding system. Orphanet J Rare Dis. 2021;16:198. https://doi.org/10.1186/s13023-021-01831-3. Sweet LE, Moulaison HL. Electronic health records data and metadata: challenges for big data in the United States. Big data. 2013;1(4):245–51. Gardner RL, Cooper E, Haskell J, Harris DA, Poplau S, Kroth PJ, et al. Physician stress and burnout: the impact of health information technology. J Am Med Inform Assoc. 2019;26(2):106–14. Srivastava R. When the EMR Stole My Pen. N Engl J Med. 2020;383(8):708–9. Kissler MJ, Kissler K, Burden M. Toward a medical “ecology of attention.” N Engl J Med. 2021;384(4):299–301. The Office of the National Coordinator for Health Information Technology. National Health IT Priorities for Research. 2020.( https://www.healthit.gov/sites/default/files/page/2020-01/PolicyandDevelopmentAgenda.pdf) Accessed 13th Dec 2022. Bellgard MI, Snelling T, McGree JM. RD-RAP: beyond rare disease patient registries, devising a comprehensive data and analytic framework. Orphanet J Rare Dis. 2019;14(1):176. Atalaia A, Thompson R, Corvo A, Carmody L, Piscia D, Matalonga L, et al. A guide to writing systematic reviews of rare disease treatments to generate FAIR-compliant datasets: building a Treatabolome. Orphanet J Rare Dis. 2020;15(1):206. Wardle M, Spencer A. Implementation of SNOMED CT in an online clinical database. Future Healthc J. 2017;4(2):126–30. Springate DA, Kontopantelis E, Ashcroft DM, Olier I, Parisi R, Chamapiwa E, et al. ClinicalCodes: an online clinical codes repository to improve the validity and reproducibility of research using electronic medical records. PLoS ONE. 2014;9(6):e99825. World Health Organization. Global strategy on digital health 2020–2025. 2020 https://www.who.int/docs/default-source/documents/gs4dhdaa2a9f352b0445bafbc79ca799dce4d.pdf. Accessed 13th Dec 2022. Organisation for Economic Co-operation and Development Development (OECD). Skills Matter: Additional Results from the Survey of Adult Skills. 2019. (https://www.oecd.org/skills/piaac/). Mandl KD, Szolovits P, Kohane IS. Public standards and patients’ control: how to keep electronic medical records accessible but private. BMJ. 2001;322(7281):283–7. Cebul RD, Love TE, Jain AK, Hebert CJ. electronic health records and quality of diabetes care. N Engl J Med. 2011;365(9):825–33. Lyles C, Schillinger D, Sarkar U. Connecting the dots: health information technology expansion and health disparities. PLoS Med. 2015;12(7):e1001852. Menon DU, Belcher HME. COVID-19 pandemic health disparities and pediatric health care-the promise of telehealth. JAMA Pediatr. 2020. https://doi.org/10.1001/jamapediatrics.2020.5097. Kavadichanda C, Shah S, Daber A, Bairwa D, Mathew A, Dunga S, et al. Tele-rheumatology for overcoming socioeconomic barriers to healthcare in resource constrained settings: lessons from COVID-19 pandemic. Rheumatology. 2020. https://doi.org/10.1093/rheumatology/keaa791. Sittig DF, Singh H. Electronic health records and national patient-safety goals. N Engl J Med. 2012;367(19):1854–60. Best S, Vidic N, An K, Collins F, White SM. A systematic review of geographical inequities for accessing clinical genomic and genetic services for non-cancer related rare disease. Eur J Hum Genet. 2022;30:645–52. United Nations News. World must be ready for the next pandemic, UN says on first International Day of Epidemic Preparedness. 2020. (https://www.un.org/en/observances/epidemic-preparedness-day). Accessed 13th Dec 2022. Ashrafian H, Darzi A. Transforming health policy through machine learning. PLoS Med. 2018;15(11):e1002692.