Publishing Identifiable Patient Photographs in the Digital Age: Focus Group Study of Patients, Doctors, and Medical Students.

Background: The publication of patient photographs in scientific journals continues to pose challenges regarding privacy and confidentiality, despite existing ethical guidelines. Recent studies indicate that key stakeholders-including health care professionals and patients-lack sufficient awareness of the ethical considerations surrounding patient photographs, particularly in the context of digital scientific publishing.

Objective: This qualitative study aims to explore how different stakeholders-patients, medical students, and doctors-understand the challenges of patient privacy and confidentiality in scientific publications. Additionally, it sought to identify key areas for future research, particularly in the context of online, open-access articles.

Methods: We conducted 4 online focus groups due to COVID-19 restrictions: 1 with patients, 2 with final-year medical students, and 1 with head and neck physicians and dentists who regularly handle patient photographs. Participants were invited via email, and those who accepted took part in discussions lasting approximately 1 hour. All interviews were recorded and transcribed for analysis. All 4 focus groups were asked the same set of questions, covering the following topics: (1) 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 deidentifying patient photographs, and (5) the use of patient photographs in online, open-access publishing.

Results: Three key themes emerged from the focus group discussions: (1) no definitive resources or practical recommendations available, (2) online publishing of patient images makes them more open to misuse, and (3) anonymization techniques have limitations. All stakeholder groups expressed a lack of knowledge about online publishing in general and concerns about the fate of patient photographs in the digital environment after publication. They emphasized the need for increased awareness among all relevant stakeholders and more stringent procedures for obtaining informed patient consent before publishing photographs. While they recognized the usefulness of image anonymization techniques in protecting patient identity, they were also aware that current methods remain insufficient to ensure complete anonymity.

Conclusions: This qualitative study highlights that publishing patient photographs in open-access scientific journals is an important, serious, and largely unexplored issue, with all stakeholders still uncertain about the best ways to protect patient privacy. Clinicians, publishers, and journal editors should not only implement best practices to ensure fully informed patient consent for publishing identifiable photographs but also develop technical and governance safeguards. Future quantitative studies are needed to identify the most effective ways to enhance stakeholders' knowledge, policies, and procedures, ultimately guiding the development of practical recommendations for the ethical publication of patient photographs in scientific journals.