JMIR Publications

ABSTRACT

Background:

Publishing patient identifiable data in scientific journals may jeopardise patient privacy and confidentiality if best ethical practices are not followed. Current journal practices show a considerable diversity in publication of identifiable patient photographs and different stakeholders may have different opinions and practices in using patient photographs.

Objective:

This scoping review aimed to identify the existing evidence and map knowledge gaps in medical research about the policies and practices of publishing identifiable photographs in scientific journals.

Methods:

We performed a comprehensive search of Cochrane Central Register of Controlled Trials (CENTRAL), Cochrane Database of Systematic Reviews (CDSR), CINAHL with Full Text, Database of Abstracts of Reviews of Effects (DARE), Ovid MEDLINE, and Scopus databases. Open Science Framework, Prospero database, Base-search.net, Google Scholar, Opengrey.org, Clinicaltrials.gov and Campbell Collaboration Library and Science.gov were also searched.

Results:

After screening initial 15,935 titles and abstracts, 98 publications were assessed for eligibility at the level of full texts and 30 publications were included in this review. The studies were published from 1994 to 2020, most had cross-sectional design and were published in journals covering different medical disciplines. We identified three main topics. The first included ethical and legal aspects of the use of medical photography in publications. In different clinical settings, the consenting process was not conducted properly, and health professionals did not recognize the importance of obtaining written patient consent for taking and using patient medical photographs. They often considered verbal consent sufficient or even used them without consent. The second topic included studies that investigated the practices and use of medical photography in publishing. Both patients and doctors asked for confidential storage and maintenance of medical photographs. Patients preferred to be photographed by their physicians using institutional camera and preferred non-identifiable medical photographs, not only for the publication but in general. Conventional methods of de-identification of facial photographs concealing the eye area were recognized as unsuccessful to preserve patient identity. The third topic emerged from studies that investigated medical photography in journal articles. These studies showed great diversity in publishing practices regarding the consent for publication of medical photographs. Journal policies regarding consenting process and consent forms were insufficient and existing ethical professional guidelines were not fully implemented into actual practices. Patients’ photographs from open access medical journals were found on public online platforms.

Conclusions:

This scoping review showed a diversity of practices on publishing identifiable patient photographs and unsatisfactory level of knowledge on this issue among different stakeholders despite existing standards. The emerging issues include the availability of patients’ photographs from open access journals or preprint in the digital environment. There is a need to create tools that would protect the privacy of patients in published articles. Clinical Trial: N/A