Best Practices for Clinical Image Collection and Utilization in Patients With Skin of Color

Clinical images are integral to dermatologic care, research, and education. Studies have highlighted the underrepresentation of images of skin of color (SOC) in educational materials,¹ clinical trials,² and research publications.³ Recognition of this disparity has ignited a call to action by dermatologists and dermatologic organizations to address the gap by improving the collection and use of SOC images.⁴ It is critical to remind dermatologists of the importance of properly obtaining informed consent and ensuring images are not used without a patient’s permission, as images in journal articles, conference presentations, and educational materials can be widely distributed and shared. Herein, we summarize current practices of clinical image storage and make general recommendations on how dermatologists can better protect patient privacy. Certain cultural and social factors in patients with SOC should be considered when obtaining informed consent and collecting images.

Clinical Image Acquisition

Consenting procedures are crucial components of proper image usage. However, current consenting practices are inconsistent across various platforms, including academic journals, websites, printed text, social media, and educational presentations.⁵

Current regulations for use of patient health information in the United States are governed by the Health Insurance Portability and Accountability Act (HIPAA)of 1996. Although this act explicitly prohibits use of “full face photographic images and any comparable images” without consent from the patient or the patient’s representative, there is less restriction regarding the use of deidentified images.⁶ Some clinicians or researchers may consider using a black bar or a masking technique over the eyes or face, but this is not always a sufficient method of anonymizing an image.

One study investigating the different requirements listed by the top 20 dermatology journals (as determined by the Google Scholar h5-index) found that while 95% (19/20) of journals stated that written or signed consent or permission was a requirement for use of patient images, only 20% (4/20) instructed authors to inform the patient or the patient’s representative that images may become available on the internet.⁵ Once an article is accepted for publication by a medical journal, it eventually may be accessible online; however, patients may not be aware of this factor, which is particularly concerning for those with SOC due to the increased demand for diverse dermatologic resources and images as well as the highly digitalized manner in which we access and share media.

Furthermore, cultural and social factors exist that present challenges to informed decision-making during the consenting process for certain SOC populations such as a lack of trust in the medical and scientific research community, inadequate comprehension of the consent material, health illiteracy, language barriers, or use of complex terminology in consent documentation.^7,8 Studies also have shown that patients in ethnic minority groups have greater barriers to health literacy compared to other patient groups, and patients with limited health literacy are less likely to ask questions during their medical visits.^9,10 Therefore, when obtaining informed consent for images, it is important that measures are taken to ensure that the patient has full knowledge and understanding of what the consent covers, including the extent to which the images will be used and/or shared and whether the patient’s confidentiality and/or anonymity are at risk.

Recommendations—We propose that dermatologists should follow these recommendations:

1. Encourage influential dermatology organizations such as the American Academy of Dermatology to establish standardized consenting procedures for image acquisition and use, including requirements to provide (a) written consent for all patient images and (b) specific details as to where and how the image may be used and/or shared.

2. Ensure that consent terminology is presented at a sixth-grade reading level or below, minimize the use of medical jargon and complex terms, and provide consent documentation in the patient’s preferred language.

3. Allow patients to take the consent document home so they can have additional time to comprehensively review the material or have it reviewed by family or friends.

4. Employ strategies such as teach-back methods and encourage questions to maximize the level of understanding during the consent process.

Clinical Image Storage

Clinical image storage procedures can have an impact on a patient’s health information remaining anonymous and confidential. In a survey evaluating medical photography use among 153 US board-certified dermatologists, 69.1% of respondents reported emailing or texting images between patients and colleagues. Additionally, 30.3% (46/152) reported having patient photographs stored on their personal phone at the time of the survey, and 39.1% (18/46) of those individuals had images that showed identifiable features, such as the patient’s face or a tattoo.¹¹