Publishing Identifiable Patient Photographs in Scientific Journals: Scoping Review of Policies and Practices

Abstract

Background Publishing identifiable patient data in scientific journals may jeopardize patient privacy and confidentiality if best ethical practices are not followed. Current journal practices show considerable diversity in the publication of identifiable patient photographs, and different stakeholders may have different opinions of and practices in publishing patient photographs. Objective This scoping review aimed to identify existing evidence and map knowledge gaps in medical research on the policies and practices of publishing identifiable photographs in scientific articles. Methods We performed a comprehensive search of the Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, CINAHL with Full Text, Database of Abstracts of Reviews of Effects, Ovid MEDLINE, and Scopus. The Open Science Framework, PROSPERO, BASE, Google Scholar, OpenGrey, ClinicalTrials.gov, the Campbell Collaboration Library, and Science.gov were also searched. Results After screening the initial 15,949 titles and abstracts, 98 (0.61%) publications were assessed for eligibility at the full-text level, and 30 (0.19%) publications were included in this review. The studies were published between 1994 and 2020; most had a cross-sectional design and were published in journals covering different medical disciplines. We identified 3 main topics. The first included ethical aspects of the use of facial photographs in publications. In different clinical settings, the consent 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 the photographs 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 an institutional camera and preferred nonidentifiable medical photographs not only for publication but also in general. Conventional methods of deidentification of facial photographs concealing the eye area were recognized as unsuccessful in protecting patient privacy. The third topic emerged from studies investigating medical photography in journal articles. These studies showed great diversity in publishing practices regarding consent for publication of medical photographs. Journal policies regarding the consent process and consent forms were insufficient, and existing ethical professional guidelines were not fully implemented in actual practices. Patients’ photographs from open-access medical journals were found on public web-based platforms. Conclusions This scoping review showed a diversity of practices in publishing identifiable patient photographs and an unsatisfactory level of knowledge of this issue among different stakeholders despite existing standards. Emerging issues include the availability of patients’ photographs from open-access journals or preprints in the digital environment. There is a need to improve standards and processes to obtain proper consent to fully protect the privacy of patients in published articles.

Exposed secrets: Unmasking the ethical dilemma of orthodontic photographs on social media

“…The ethical implications of sharing orthodontic extra oral photographs on social media are noteworthy due to the possibility of disseminating misinformation, promoting false narratives, and undermining trust in digital media. To mitigate these concerns, it is imperative that social media platforms, artificial intelligence developers, and regulatory entities work in concert to establish effective detection protocols and protective measures against the proliferation of deep fake content [86][87][88][89] . The development of artificial intelligence (AI) algorithms capable of identifying and alerting to manipulated photographs is a crucial measure in safeguarding the privacy of individuals and curbing the spread of inaccurate or harmful content.…”

A Scoping Review on Analysis of the Barriers and Support Factors of Open Data

“…There is a lack of time and resources to acquire the missing skills [61]. There is a lack of background knowledge about Open Data [7,27], and the goals of Open Data use are not understood [5].…”

“…Additionally, many different systems, infrastructures, data formats, and cybersecurity protocols are considered another technological barrier [15,27]. Furthermore, analytical techniques that are currently insufficiently available are required [2,7,10,11,23]. Comprehensive solutions for all data types are still lacking [14,18].…”

“…Dynamic consents as a potential solution pose their own challenges, including the potential under-representation of minorities through this process [18] and the need for ongoing contact with data contributors, which can be highly resource-intensive [1,27]. Another barrier is understanding and assessing consent agreements [6,7,50]. Consent forms are sometimes misunderstood [50], and consents are misinterpreted and evaluated incorrectly [6,7].…”

“…Many opportunities, especially in managing diverse sources of personal health data, remain unexplored [2]. Organizations often struggle to prepare and integrate available datasets for comprehensive analysis, hindering the ability to derive full benefits from the data [6][7][8].…”