Ethical and Information Governance Considerations for Promoting Digital Social Interventions in Primary Care

Georgios Dimitrios Karampatakis; Helen E Wood; Chris J Griffiths; Nathan C Lea; Richard E Ashcroft; Bill Day; Neil Walker; Neil S Coulson; Anna De Simoni

doi:10.2196/44886

Ethical and Information Governance Considerations for Promoting Digital Social Interventions in Primary Care

J Med Internet Res. 2023 Sep 27:25:e44886. doi: 10.2196/44886.

Authors

Georgios Dimitrios Karampatakis¹, Helen E Wood¹, Chris J Griffiths¹, Nathan C Lea², Richard E Ashcroft³, Bill Day¹, Neil Walker¹, Neil S Coulson⁴, Anna De Simoni¹

Affiliations

¹ Wolfson Institute of Population Health, Barts and The London School of Medicine and Dentistry, Asthma UK Centre for Applied Research, Queen Mary University of London, London, United Kingdom.
² Department of Medical Informatics & Statistics, The European Institute for Innovation through Health Data, Ghent University Hospital, Ghent, Belgium.
³ The City Law School, City University of London, London, United Kingdom.
⁴ Medical School, Nottingham City Hospital, Nottingham, United Kingdom.

PMID: 37756051
PMCID: PMC10568391
DOI: 10.2196/44886

Abstract

Promoting online peer support beyond the informal sector to statutory health services requires ethical considerations and evidence-based knowledge about its impact on patients, health care professionals, and the wider health care system. Evidence on the effectiveness of digital interventions in primary care is sparse, and definitive guidance is lacking on the ethical concerns arising from the use of social media as a means for health-related interventions and research. Existing literature examining ethical issues with digital interventions in health care mainly focuses on apps, electronic health records, wearables, and telephone or video consultations, without necessarily covering digital social interventions, and does not always account for primary care settings specifically. Here we address the ethical and information governance aspects of undertaking research on the promotion of online peer support to patients by primary care clinicians, related to medical and public health ethics.

Keywords: data governance; digital health; digital intervention; digital social interventions; ethics; information governance; online health communities; peer support; primary care; social intervention.

©Georgios Dimitrios Karampatakis, Helen E Wood, Chris J Griffiths, Nathan C Lea, Richard E Ashcroft, Bill Day, Neil Walker, Neil S Coulson, Anna De Simoni. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 27.09.2023.