Ethics in Health Data Science

MacPherson, Yvonne; Pham, Kathy

doi:10.1007/978-3-030-47994-7_22

Cited by 3 publications

(2 citation statements)

References 3 publications

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“…This raises concerns about the overall use of social media data for research, as data science in general and public health research in particular use data to make insights; these data “then get acted upon and the decisions impact people’s lives” [ 20 ]. Hence, conscientious planning is advised when using publicly available social media data for the purpose of public health research.…”

Section: Discussionmentioning

confidence: 99%

Ethical and Methodological Considerations of Twitter Data for Public Health Research: Systematic Review

Takats¹,

Kwan²,

Wormer³

et al. 2022

J Med Internet Res

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Background Much research is being carried out using publicly available Twitter data in the field of public health, but the types of research questions that these data are being used to answer and the extent to which these projects require ethical oversight are not clear. Objective This review describes the current state of public health research using Twitter data in terms of methods and research questions, geographic focus, and ethical considerations including obtaining informed consent from Twitter handlers. Methods We implemented a systematic review, following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines, of articles published between January 2006 and October 31, 2019, using Twitter data in secondary analyses for public health research, which were found using standardized search criteria on SocINDEX, PsycINFO, and PubMed. Studies were excluded when using Twitter for primary data collection, such as for study recruitment or as part of a dissemination intervention. Results We identified 367 articles that met eligibility criteria. Infectious disease (n=80, 22%) and substance use (n=66, 18%) were the most common topics for these studies, and sentiment mining (n=227, 62%), surveillance (n=224, 61%), and thematic exploration (n=217, 59%) were the most common methodologies employed. Approximately one-third of articles had a global or worldwide geographic focus; another one-third focused on the United States. The majority (n=222, 60%) of articles used a native Twitter application programming interface, and a significant amount of the remainder (n=102, 28%) used a third-party application programming interface. Only one-third (n=119, 32%) of studies sought ethical approval from an institutional review board, while 17% of them (n=62) included identifying information on Twitter users or tweets and 36% of them (n=131) attempted to anonymize identifiers. Most studies (n=272, 79%) included a discussion on the validity of the measures and reliability of coding (70% for interreliability of human coding and 70% for computer algorithm checks), but less attention was paid to the sampling frame, and what underlying population the sample represented. Conclusions Twitter data may be useful in public health research, given its access to publicly available information. However, studies should exercise greater caution in considering the data sources, accession method, and external validity of the sampling frame. Further, an ethical framework is necessary to help guide future research in this area, especially when individual, identifiable Twitter users and tweets are shared and discussed. Trial Registration PROSPERO CRD42020148170; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=148170

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Section: Discussionmentioning

confidence: 99%

Ethical and Methodological Considerations of Twitter Data for Public Health Research: Systematic Review

Takats¹,

Kwan²,

Wormer³

et al. 2022

J Med Internet Res

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“…Recently there have been numerous security breaches into healthcare data leading to misuse of the individual data like the Blackbaud Ransomware Attack [15] or the recent cyber-attack on a Finnish psychotherapy provider [2] where the sensitive data of the patients was stolen and they were threatened for ransom.…”

Section: Data Securitymentioning

confidence: 99%

Framework for Data Ethics Tenets in Healthcare with Use Case

Khobragade¹,

Ponde²,

Bharambe³

2023

Advances in Computer Science Research

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Innovation in latest technologies have provided means to gather data using various ways. Almost all the domains generate, store, and analyze the data for the improvement of the services they provide. The healthcare industry too generates a significant data which is used for improving public healthcare. While dealing with health data, it is necessary to follow appropriate data ethics as health data is considered the most sensitive and it needs to be properly collected, stored, processed and shared with different domains. This research paper discusses about the various data ethics to be followed to handle individual's health data, suggests a framework to deal with this data and a use case is suggested to understand the data ethics tenets.

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Health Data Science and Semantic Technologies

Ayatollahi¹

2022

Data Science With Semantic Technologies

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Ethics in Health Data Science

Cited by 3 publications

References 3 publications

Ethical and Methodological Considerations of Twitter Data for Public Health Research: Systematic Review

Ethical and Methodological Considerations of Twitter Data for Public Health Research: Systematic Review

Framework for Data Ethics Tenets in Healthcare with Use Case

Health Data Science and Semantic Technologies

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