Ethical Considerations for Participatory Health through Social Media: Healthcare Workforce and Policy Maker Perspectives

Rivera-Romero, Octavio; Stathis, Konstantinidis; Denecke, Kerstin; Gabarrón, Elia; Petersen, Carolyn; Househ, Mowafa; Merolli, Mark; Mayer, Miguel Ángel (2020). Ethical Considerations for Participatory Health through Social Media: Healthcare Workforce and Policy Maker Perspectives Yearbook of Medical Informatics, 29(01), 071-076. Thieme 10.1055/s-0040-1701981

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Objectives: To identify the different ethical issues that should be considered in participatory health through social media from different stakeholder perspectives (i.e., patients/service users, health professionals, health information technology (IT) professionals, and policy makers) in any healthcare context. Methods: We implemented a two-round survey composed of open ended questions in the first round, aggregated into a list of ethical issues rated for importance by participants in the second round, to generate a ranked list of possible ethical issues in participatory health based on healthcare professionals’ and policy makers’ opinions on both their own point of view and their beliefs for other stakeholders’ perspectives. 1 Introduction Nowadays, individuals have more autonomy, access to information, and human capital to support their health decisions than previously fathomable [1, 2]. These informed, connected, and socially supported health consumers (or patients) are leading a shift in the way healthcare is approached, delivered, and governed. This very notion lies at the heart of participatory health, which centers on collaboration and shared-decision making [2, 3]. Results: Twenty-six individuals responded in the first round of the survey. Multiple ethical issues were identified for each perspective. Data privacy, data security, and digital literacy were common themes in all perspectives. Thirty-three individuals completed the second round of the survey. Data privacy and data security were ranked among the three most important ethical issues in all perspectives. Quality assurance was the most important issue from the healthcare professionals’ perspective and the second most important issue from the patients’ perspective. Data privacy was the most important consideration for patients/service users. Digital literacy was ranked as the fourth most important issue, except for policy makers’ perspective. Conclusions: Different stakeholders’ opinions fairly agreed that there are common ethical issues that should be considered across the four groups (patients, healthcare professionals, health IT professionals, policy makers) such as data privacy, security, and quality assurance.

Item Type:	Journal Article (Original Article)
Division/Institute:	School of Engineering and Computer Science > Institute for Patient-centered Digital Health School of Engineering and Computer Science
Name:	Rivera-Romero, Octavio; Stathis, Konstantinidis; Denecke, Kerstin0000-0001-6691-396X; Gabarrón, Elia; Petersen, Carolyn; Househ, Mowafa; Merolli, Mark and Mayer, Miguel Ángel
Subjects:	Q Science > Q Science (General) T Technology > T Technology (General)
ISSN:	2364-0502
Publisher:	Thieme
Language:	English
Submitter:	Kerstin Denecke
Date Deposited:	31 Mar 2020 10:58
Last Modified:	25 Oct 2023 14:15
Publisher DOI:	10.1055/s-0040-1701981
ARBOR DOI:	10.24451/arbor.11587
URI:	https://arbor.bfh.ch/id/eprint/11587