UCalgary researchers concerned about number of patient photos ending up online

University of Calgary researchers are raising questions about ethics and individual patient privacy, after their research found a surprising majority of the medical photos they searched for were easily found on Google Images.

“By coincidence, I figured out that patient photographs published in medical journals could end up online in places like Google Images,” says Dr. Zack Marshall, PhD, an associate professor in Community Health Sciences at the Cumming School of Medicine (CSM), and a member of the O’Brien Institute for Public Health. The study, was published in the Journal of Medical Internet Research on June 24. 

Marshall has been studying patient privacy for years, first discovering the issue during his doctoral research at Memorial University in 2017. He studied medical case reports, which are an important tool for doctors when communicating information to colleagues in the medical field. The reports often contain photos and descriptions of a patient’s rare features, conditions or complications. Sharing the reports helps contribute to advances in medicine.

In a study published in 2018, researchers including Marshall found at least one photo online from 37 per cent of the papers studied.. He recently replicated the study with a random sample and found the problem has escalated in the past six years.

In the study published this month, drawing on a random sample of 186 case reports that contained patient photos, researchers found for 76 per cent of those, at least one photo from the case report was found in Google Image Search results. Researchers looked at a random sample of case reports found in PubMed — a free online biomedical and life sciences resource — between 2017 to 2018.

“If the journal publishers and tech companies are not willing to change their practices to safeguard patient privacy, then at the very least clinicians need to inform patients of these risks,” says Marshall. 

The images in case reports are published in medical journals, which are often available online. By conducting a quick search of the title of the case report on Google Images, the pictures start popping up. But did the patient know they would?

“That’s a really important question,” says Marshall. He says they found images that were identifiable, including faces, and images of parts of the body like a forearm or knee, which are less so. 

“When a case report is published, it is not simply the photograph that’s published. The text also includes information about the gender and age of the patients, the names of the clinician authors and their institutional affiliation,” says Marshall. “Taken together, it is more likely that a patient could be identified.”

Marshall says informed consent is a key consideration.

“Written consent forms are usually required to capture patient photographs for educational purposes,” he says. “However, most written consent forms do not inform patients about the possibility of their images published in peer-reviewed journals ending up on large, widely accessible image repositories.”

“Some doctors may not even know this is occurring,” he adds.

“What we found raises ethical concerns with policy and practice implications,” says Marshall. “Publishers and corporations such as Google are best positioned to develop the most effective remedies.” 

“Until they take action, patients should be adequately informed about the potential risks and benefits of providing consent for clinicians to publish their images in medical journals. It should be clear to all during the process of giving consent that the image might one day be available in public,” he says.

Patients help further research

Lauren Asaad was one of several undergraduate and graduate research assistants who worked with Marshall to study this issue. For her undergrad thesis, Asaad shared the study findings with patients, seeking to explore their responses and gather feedback from patients about improving the informed consent process.

“We hope to inform and identify future recommendations on how to close these gaps in patient-informed consent, and to contribute to a larger dialogue about the potential for a standardized patient consent form, or consent form checklist, for journals publishing medical case reports,” she says.

This patient-oriented research also included two patient partner co-researchers. Interviews with members of the public highlighted the potential risk of the patient/provider relationship deteriorating if patient photographs appeared on highly accessible online platforms. And the need for transparency during the consent process about what may occur as well as other ideas to improve consent forms.

The team shared their findings related to patient perspectives and recommended changes to the consent form process at the International Conference on Clinical Ethics and Consultation and Canadian Bioethics Society in Montreal at the end of May.

Funders of this research included the National Sciences and Engineering Research Council of Canada (NSERC), who contributed to student stipends, and the CSM’s Bachelor of Health Sciences O’Brien Centre Summer Studentships.