Linking Survey and Twitter Data: Informed Consent, Disclosure, Security, and Archiving.
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ABSTRACT:
SUBMITTER: Sloan L
PROVIDER: S-EPMC7049949 | biostudies-literature | 2020 Feb-Apr
REPOSITORIES: biostudies-literature
Publications
Linking Survey and Twitter Data: Informed Consent, Disclosure, Security, and Archiving.
Sloan Luke L Jessop Curtis C Al Baghal Tarek T Williams Matthew M
Journal of empirical research on human research ethics : JERHRE 20190621 1-2
Linked survey and Twitter data present an unprecedented opportunity for social scientific analysis, but the ethical implications for such work are complex-requiring a deeper understanding of the nature and composition of Twitter data to fully appreciate the risks of disclosure and harm to participants. In this article, we draw on our experience of three recent linked data studies, briefly discussing the background research on data linkage and the complications around ensuring informed consent. P ...[more]
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Project description:BackgroundThe legal and ethical guidelines of psychological professional associations stipulate that informed consent by patients is an essential prerequisite for psychotherapy. Despite this awareness of the importance of informed consent, there is little empirical evidence on what psychotherapists' attitudes towards informed consent are and how informed consent is implemented in psychotherapeutic practice.Methods155 psychotherapists in Switzerland completed an online survey assessing their attitudes regarding informed consent.ResultsAmong the surveyed psychotherapists, there was a high consensus on important information that should be communicated to patients in the context of informed consent. Almost all psychotherapists rated confidentiality and its exemptions (95%) and self-determined decision-making (97%) as important. The importance to disclose information regarding fees and the empirical effectiveness of the provided treatment, were both seen as important by more than 80% of participants. The disclosure of personal information about the therapist was rated as important by 60%. Other aspects, which are not direct components of informed consent but rather overarching goals, were also evaluated rather homogeneously: self-determined decision making of the patient was rated as important by almost all of the surveyed psychotherapists (97%). The following components were also judged as important by a majority of the participants: promotion of hope (80%) and discussion of treatment goals (93%). Most psychotherapists described the implementation of informed consent as an ongoing process, rather than a one-time event during the first session of therapy. Therapists' age, postgraduate training, treated patient group, and setting influenced attitudes towards informed consent.ConclusionsThe present study shows that informed consent is perceived by psychotherapists as both a challenge and a resource. The implementation of informed consent in psychotherapy requires further research from a clinical and ethical perspective.
| S-EPMC8588676 | biostudies-literature
Project description:BackgroundWe assessed potential consent bias in a cohort of > 40,000 adult patients asked by mail after hospitalization to consent to the use of past, present and future clinical and biological data in an ongoing 'general consent' program at a large tertiary hospital in Switzerland.MethodsIn this retrospective cohort study, all adult patients hospitalized between April 2019 and March 2020 were invited to participate to the general consent program. Demographic and clinical characteristics were extracted from patients' electronic health records (EHR). Data of those who provided written consent (signatories) and non-responders were compared and analyzed with R studio.ResultsOf 44,819 patients approached, 10,299 (23%) signed the form. Signatories were older (median age 54 [IQR 38-72] vs. 44 years [IQR 32-60], p < .0001), more comorbid (2614/10,299 [25.4%] vs. 4912/28,676 [17.1%] with Charlson comorbidity index ≤ 4, p < .0001), and more often of Swiss nationality (6592/10,299 [64%] vs. 13,813/28,676 [48.2%], p < .0001).ConclusionsOur results suggest that actively seeking consent creates a bias and compromises the external validity of data obtained via 'general consent' programs. Other options, such as opt-out consent procedures, should be further assessed.
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