CC BY-NC-ND 4.0 · Yearb Med Inform 2020; 29(01): 071-076
DOI: 10.1055/s-0040-1701981
Special Section: Ethics in Health Informatics
Working Group Contributions
Georg Thieme Verlag KG Stuttgart

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

Contribution of the IMIA Participatory Health and Social Media Working Group
Octavio Rivera-Romero
1  Computer Engineering School, Universidad de Sevilla, Seville, Spain
Stathis Konstantinidis
2  University of Nottingham, Nottingham, UK
Kerstin Denecke
3  Bern University of Applied Sciences, Bern, Switzerland
Elia Gabarrón
4  Norwegian Centre of E-Health Research, University Hospital North Norway, Norway
Carolyn Petersen
5  Division of Biomedical Statistics and Informatics, Mayo Clinic, Rochester, MN, USA
Mowafa Househ
6  College of Science and Engineering, Hamad Bin Khalifa University, Doha, Qatar
Mark Merolli
7  Health and Biomedical Informatics Centre, Melbourne Medical School, University of Melbourne, Melbourne, Australia
Miguel Ángel Mayer
8  Research Programme on Biomedical Informatics, Hospital del Mar Medical Research Institute, Universitat Pompeu Fabra, Barcelona, Spain
› Author Affiliations
Further Information

Publication History

Publication Date:
17 April 2020 (online)


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.

Supplementary Material