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Big data and public health
Published in Sridhar Venkatapuram, Alex Broadbent, The Routledge Handbook of Philosophy of Public Health, 2023
As data are increasingly stored digitally, the process whereby preexisting data from sources like insurance, government, pharmacy, and school records are converted into data sets fit for public health work has been simplified. Electronic health records (EHRs) are a particularly attractive source of data because they contain a wealth of important health information collected longitudinally and linked to the demographic details of many patients. However, a major hurdle for research with EHRs or other sources with preexisting data is interoperability: roughly, the ability to merge data sets and analyze them together with the same tools (Ehrenstein et al. 2017; Jensen, Jensen, and Brunak 2012). Some challenges for achieving interoperability are practical, such as the use of incompatible data formats as well as variation in how people record the same information in EHRs. But interoperability could also be diminished if different theories related to diagnosis and treatment produce different clinical practices between providers. And values related to patient well-being, patient privacy, and the use of EHRs for billing could influence what information is considered worth recording.
Global Health in a Digital World
Published in Rui Nunes, Healthcare as a Universal Human Right, 2022
However, the interface between privacy and autonomy also determines the universally recognized right of patients to be able to access medical information that directly concerns them. In some contexts, medical and health information have been differentiated. If health information allows for understanding all types of personal information (directly or indirectly linked to the present or future health of the individual, besides their clinical and family history), this concept then includes information intended to be used in health-related care that is medical information in the strictest sense. However, when personal information is defined by any information of any nature and in any format (including sound and images) relating to an identified or identifiable person (data subject), the question of the actual ownership of health information and of the clinical data recorded needs to be carefully considered.
Macroergonomics of Patient Work
Published in Richard J. Holden, Rupa S. Valdez, The Patient Factor, 2021
Pascale Carayon, Armagan Albayrak, Richard Goossens, Peter Hoonakker, Bat-Zion Hose, Michelle M. Kelly, Marijke Melles, Megan E. Salwei
Various health information technologies have been developed to enhance the work of patients and their interactions with clinicians (see Chapter 5 in this volume). One example is patient portals. Linked to an electronic health record system, patient portals allow patients to view online information about their care, including information about their medical conditions, medications, test results, and the clinicians who care for them. Patient portals can also be used to schedule appointments, pay medical bills, and send secure messages to clinicians. Patient portals have evolved to support the work of patients and clinicians in different contexts. Patient portals were initially designed to support the care of patients in the ambulatory setting and to facilitate their interactions with outpatient clinicians (Kelly et al., 2018). Newer inpatient or acute care portals support patients during hospitalization and will be discussed in this section.
Real world data for rare diseases research: The beginner’s guide to registries
Published in Expert Opinion on Orphan Drugs, 2023
Federica Pisa, Ariel Arias, Emily Bratton, Maribel Salas, Janet Sultana
A disease-based registry is a patient registry whose members are defined by a particular disease or disease-related patient characteristic regardless of exposure to any medicinal product, other treatment, or particular health service [16]. They include longitudinal data on patients based on a defined diagnosis, focusing on one specific or a group of RDs. They collect static information about demographics, family history, genetic and clinical characteristics at study entry. The registries also collect retrospective and prospective time-varying characteristics including examinations, laboratory tests, medical therapies, and outcomes. These outcomes may include patients’ reported outcomes and quality of life measures, but also changes in treatment and clinical parameters. These longitudinal data enable natural history information to emerge from patient registries. Patient data can be linked to external sources of data (e.g. mortality registries, biobanks, imaging, or pathology registries).
Diagnostic validation and development of an algorithm for identification of intussusception in children using electronic health records of Ningbo city in China
Published in Expert Review of Vaccines, 2023
Siwei Deng, Zhike Liu, Junting Yang, Liang Zhang, Tiejun Shou, Jianming Zhu, Yan He, Rui Ma, Ning Li, Guozhang Xu, Siyan Zhan
Ningbo is a city in Zhejiang Province, located on the east coast of China, with more than 9.54 million permanent residents at the end of 2021. According to a survey conducted in Yinzhou, a developed district of Ningbo city, the coverage of 3 doses of rotavirus vaccine was 0.41% in 2017 [17]. The RHIP in Ningbo was established in 2011 and launched by the Health Commission of Ningbo with the aim of developing an integrated and standardized medical information network. The RHIP in Ningbo has two primary data sources: the digital platform of the Centers for Disease Control and Prevention (CDC), which includes primary healthcare, chronic or infectious disease surveillance, vaccine registration, and death registration data, and the digital hospital platform, which collects data from electronic medical records (EMR). These data are transformed into a structured format and linked with a unique national identifier or healthcare identifier. By 2015, the RHIP in Ningbo covered more than 87% of the residents and had collected nearly all of their healthcare information from birth to death. The vaccine registration system of the RHIP in Ningbo covers almost all permanent resident children aged <6 years. Several recent studies have used this database to monitor the post-marketing safety of various vaccines [15,18]. Detailed information on the RHIP in Ningbo can be found in previous studies [15,16].
Time difference in retrieving clinical information in Patient-overview Prostate Cancer compared to electronic health records
Published in Scandinavian Journal of Urology, 2022
Charlotte Alverbratt, Hanna Vikman, Marie Hjälm Eriksson, Pär Stattin, Ingela Franck Lissbrant
The large time difference in information retrieval between PPC and EHRs observed in this study may have several explanations. Men with advanced PCa typically undergo several lines of treatments and visit various members in a multidisciplinary team, resulting in large amounts of information. Since information in EHRs is not systematically organized and not seldom found in externally linked programs, it takes time to obtain full understanding of the clinical information. We do not know of any previously published studies comparing time spent on retrieving information between EHRs and graphical decision supports such as PPC. However, when an EHR was implemented at a Danish hospital in 2002, physicians expressed that they had lost the overview in the medical record and that it took appreciably longer time to use the EHR than paper-based records [3]. An early systematic review also showed that the EHRs were more time-consuming than paper-based records [13]. A graphical display of a uniform set of variables presented on a time-line, as in PPC, has in other studies been shown to be an effective and rapid way of communicating information, since all data is presented in one image [14].