JMIR Publications

ABSTRACT

Background:

The problem of publishing patient photographs in scientific journals regarding their privacy and confidentiality persists despite current ethical guidelines. Recent studies on this topic show that relevant stakeholders, healthcare professionals and patients are not sufficiently informed about the ethical handling of patient photographs, especially in digital scientific publishing.

Objective:

The aim of this qualitative study was to explore the how different stakeholders – patients, medical students and doctors, understand the challenges of patient privacy and confidentiality in scientific publications, and to identify targets for future research, particularly with regard to on-line, open-access articles.

Methods:

We conducted four focus groups with patients, final year medical students (2 focus groups), and head and neck physicians and dentists, who deal with photographs on a daily basis. We contacted potential participants by e-mail invitation, and those who accepted the invitation took part in focus group interviews conducted online due to COVID-19 restrictions. The duration of each focus group was approximately one hour. The interviews were recorded and transcribed into a document file. All four focus groups were asked the same questions, related 1) the consent for publishing patient photographs, 2) information on guidelines and standards for consent to publish patient photographs, 3) the importance of informed consent for various purposes, 4) methods for de-identifying patient photographs, and 5) patient photographs in on-line, open-access publishing.

Results:

Three themes were identified: 1) no definitive resources or recommendations available for consent, 2) online publishing of patient images makes them more open to misuse, 3) anonymization techniques have limitations. All stakeholders reported lack of knowledge regarding online publishing in general as well as concern with what happens with photographs in digital environment after they are published. In their opinion, a higher level of awareness of all relevant stakeholders and more stringent procedures for obtaining patient informed consent for the publication photographs are needed.

Conclusions:

This qualitative study shows that the publishing of patient photographs in the open-access scientific journals is an important, serious and unexplored issue, where all stakeholders are still confused about how best to protect the privacy of patients. Future quantitative studies are needed to investigate the best modalities to improve relevant stakeholders’ knowledge, policies and procedures regarding ethical publishing of patient photographs in scientific journals.