Summary
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 (If) 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.
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.
Keywords
Social media - ethical issues - clinical ethics - patient-centered care - patient
participation
