ArticleYearbook of medical informatics2020
Social Media, Research, and Ethics: Does Participant Willingness Matter?
Article in Yearbook of medical informatics, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
2 citing papers in PubMed, 5 citations in OpenAlex.
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Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 2 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo summarise the state of the art published in 2019 in consumer health informatics and education, with a special emphasis on "Ethics and Health Informatics".
methodsWe conducted a systematic search of articles published in PubMed using a predefined set of queries, which identified 368 potential articles for review. These articles were screened according to topic relevance and 15 were selected for consideration of best paper candidates, which were then presented to a panel of international experts for full paper review and scoring. The top five papers according to the external reviewers' ranking were discussed in a consensus meeting. Finally, the paper that received the highest score from four of the five experts was selected as the best paper on social media and ethics for patients and consumers of the year 2019.
resultsDespite using the terms "ethics" and "ethical" in the search query, we retrieved very few articles. The bibliometric analysis identified three major clusters centred on "social", "health", and "study". Among the top five papers, one was a review where the authors identified ethical issues across four areas at the intersection of social media and health: 1) the impact of social networking sites on the doctor-patient relationship; 2) the development of e-health platforms to deliver care; 3) the use of online data and algorithms to inform health research; and 4) the broader public health consequences of widespread social media use. The other papers highlighted ethical concerns in using social media to interact with patients at different phases of a clinical research protocol, such as recruitment phase, participant engagement, data linkage, and detection and monitoring of adverse events.
conclusionsFindings suggest that most users do not think that using social media for patient monitoring in clinical research, for example using Twitter for clinical trial recruitment, constitutes inappropriate surveillance or a violation of privacy. However, further research is needed to identify whether and how views on ethical concerns differed between social media platforms and across populations.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.