Social Media, Research, and Ethics: Does Participant Willingness Matter?

OBJECTIVE: To summarise the state of the art published in 2019 in consumer health informatics and education, with a special emphasis on "Ethics and Health Informatics". METHODS: We 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. RESULTS: Despite 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. CONCLUSIONS: Findings 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.

In the patient's best interest: appraising social network site information for surrogate decision making.

This paper will discuss why and how social network sites ought to be used in surrogate decision making (SDM), with focus on a context like Singapore in which substituted judgment is incorporated as part of best interest assessment for SDM, as guided by the Code of Practice for making decisions for those lacking mental capacity under the Mental Capacity Act (2008). Specifically, the paper will argue that the Code of Practice already supports an ethical obligation, as part of a patient-centred care approach, to look for and appraise social network site (SNS) as a source of information for best interest decision making. As an important preliminary, the paper will draw on Berg's arguments to support the use of SNS information as a resource for SDM. It will also supplement her account for how SNS information ought to be weighed against or considered alongside other evidence of patient preference or wishes, such as advance directives and anecdotal accounts by relatives.