CC BY-NC-ND 4.0 · Yearb Med Inform 2018; 27(01): 029-036
DOI: 10.1055/s-0038-1641197
Special Section: Between Access and Privacy: Challenges in Sharing Health Data
Working Group Contributions
Georg Thieme Verlag KG Stuttgart

Balancing Between Privacy and Patient Needs for Health Information in the Age of Participatory Health and Social Media: A Scoping Review

Mowafa Househ
1  Department of Health Informatics, College of Public Health and Health Informatics, King Saud Bin Abdulaziz University for Health Sciences, Ministry of National Guard Health Affairs, Riyadh, Kingdom of Saudi Arabia
Rebecca Grainger
2  Rehabilitation Teaching and Research Unit (RTRU), University of Otago, Wellington, New Zealand
Carolyn Petersen
3  Global Business Solutions, Mayo Clinic, Rochester, Minnesota, United States
Panagiotis Bamidis
4  Lab of Medical Physics, Medical School, Aristotle University, Thessaloniki, Greece
5  Leeds Institute of Medical Education, University of Leeds, Leeds, United Kingdom
Mark Merolli
6  School of Health Science, Swinburne University of Technology, Melbourne, Australia
› Author Affiliations
Further Information

Publication History

Publication Date:
22 April 2018 (eFirst)



Objectives: With the increased use of participatory health enabling technologies, such as social media, balancing the need for health information with patient privacy and confidentiality has become a more complex and immediate concern. The purpose of this paper produced by the members of the IMIA Participatory Health and Social Media (PHSM) working group is to investigate patient needs for health information using participatory health enabling technologies, while balancing their needs for privacy and confidentiality.

Methods: Six domain areas including media sharing platforms, patient portals, web-based platforms, crowdsourcing websites, medical avatars, and other mobile health technologies were identified by five members of the IMIA PHSM working group as relevant to participatory health and the balance between data sharing and patient needs for privacy and confidentiality. After identifying the relevant domain areas, our scoping review began by searching several databases such as PubMed, MEDLINE, Scopus, and Google Scholar using a variety of key search terms.

Results: A total of 1,973 studies were identified, of which 68 studies met our inclusion criteria and were included in the analysis. Results showed that challenges for balancing patient needs for information and privacy and confidentiality concerns included: cross-cultural understanding, clinician and patient awareness, de-identification of data, and commercialization of patient data. Some opportunities identified were patient empowerment, connecting participatory health enabling technologies with clinical records, open data sharing agreement, and e-consent.

Conclusion: Balancing between privacy and patient needs for health information in the age of participatory health and social media offers several opportunities and challenges. More people are engaging in actively managing health through participatory health enabling technologies. Such activity often includes sharing health information and with this comes a perennial tension between balancing individual needs and the desire to uphold privacy and confidentiality. We recommend that guidelines for both patients and clinicians, in terms of their use of participatory health-enabling technologies, are developed to ensure that patient privacy and confidentiality are protected, and a maximum benefit can be realized.