Imagine seeing your face on the website of a European university, one you’ve never attended or visited.
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February 2025It happened to a patient of Matthew Q. Miller, MD.
“She called and said, ‘Hey, I just saw my picture on this website.’ She found it via Google,” said Dr. Miller, assistant professor and director of the UNC Facial Nerve Center in Chapel Hill, N.C. Fortunately, the patient, who’d given permission for her image to be used on the Center’s website, “wasn’t particularly unhappy,” and the institution that shared her image without authorization took it down after the University of North Carolina contacted them.
The incident underscores the challenges of maintaining patient privacy in the digital era. Physicians, of course, have always been expected to protect patient privacy and to obtain consent before sharing patient images, but doing so has become ever more complex. The sheer number of images generated today would be unimaginable to otolaryngologists practicing a generation or two ago—as would the ease with which images are now shared and transmitted. Fifty-four percent of the global population (and approximately 97% of the U.S. population) has smartphones, so almost anyone anywhere can snap and share photos or screenshots of images encountered online or in person (GSMA. https://tinyurl.com/mtxpcss9; Pew Research Center. https://www.pewresearch.org/internet/fact-sheet/mobile/).
Simultaneously, otolaryngologists and others realize the vast potential of patient images and recordings. Artificial intelligence (AI) and image analysis technology can identify patterns in medical images that may be difficult for humans to detect, increasing the speed and accuracy of diagnosis. But for these tools to work well, they must be trained on vast quantities of high-quality images and recordings, which must be representative of the patient population.
It was much easier to obtain patient consent and ensure privacy in the early days of otolaryngology, when candles and mirrors were used to visualize patients’ throats, and it was impossible to share images across time and space.
Today’s physicians must ensure that patients understand all possible implications of image sharing—as well as the consequences of refusing or revoking access—in a quickly evolving landscape. Technology continues to advance and find new uses for patient imagery; physician time with patients has not increased. Successfully navigating patient photo consent conversations requires clear communication, transparency, and patience, as well as a willingness to acknowledge what can and cannot be controlled.
“The part we control is the conversation we have with patients,” Dr. Miller said. “We need to be clear: Why are we taking these photos? Why are we taking this video? What exactly are we using it for?”
Dr. Miller says he doesn’t use pediatric photos on their website, but he does sometimes use them for scientific publications or presentations. “If they are seven years old or older, I will get both parental permission and assent from the child,” he said. “This is similar to what we do for pediatric research.”
Generally, patients under the age of 18 need a parent or guardian’s consent before receiving medical treatment (or to consent for images, videos, etc.). There are some exceptions, for example, if the minor is emancipated, but patients of any age must have the legal and decisional capacity to give consent.
Photos and Videos Enhance Patient Care
“Videos and still photographs are a mainstay of how we assess disease, communicate with other providers, and assess treatment response,” said Alexander Gelbard, MD, professor and vice chair of research in the department of otolaryngology–head and neck surgery at Vanderbilt University School of Medicine in Nashville. “Videos and still images offer powerful, unambiguous representations of the clinical scenario.”
Sharing images and recordings with patients can help them visualize and understand what’s happening in their bodies, which can help them make informed treatment decisions.
Sanjeet Rangarajan, MD, a rhinologist and endoscopic skull base surgeon, routinely shares endoscopic images with patients. “I will show patients those images in real-time or in immediate playback, so they can better understand what I’m seeing and why I’m making the clinical decisions I am,” said Dr. Rangarajan, associate professor of otolaryngology–head and neck surgery and vice chair of innovation and community partnerships at University Hospitals in Ohio. “I think it’s one way we can earn patients’ trust.”
Image sharing also helps multidisciplinary teams coordinate patient care. “It’s one thing for me to look at latent airway inflammations in somebody with rheumatologic disease like granulomatosis with polyangiitis, but it’s another for the rheumatologist to see that,” Dr. Gelbard said. “How are they going to understand how angry the airway is if I can’t show them a picture or video?”
When images and recordings are used to advance patient care, the consent conversation is “very straightforward,” said Matthew R. Naunheim, MD, MBA, assistant professor of otolaryngology–head and neck surgery at Harvard Medical School and associate vice chair of quality and safety at Mass Eye and Ear in Boston. “When we tell patients, ‘We’re going to record you in this way so that we can give you better patient care,’ almost no one has a problem with that.”
But providing good care also includes ensuring that patients have a full understanding of the treatment process, and, sometimes, the best way to do that is to share images and recordings of other patients. Dr. Miller, a facial plastic surgeon who specializes in treating facial paralysis, uses patient photos and videos to prepare for surgery—and to help patients prepare for surgery. “My job is to make sure that doctor and patient are on the same page. Part of that is making sure the patient’s expectations are in line with what the surgeon’s expectations are for treatment.” That often includes sharing before- and after-surgery photos to illustrate possible outcomes.
It may also include sharing video or audio recordings. “A picture is worth a thousand words, and a video is essentially a million still photographs congealed together in rapid sequence, so you can speak volumes about the patient experience with video,” said Dr. Gelbard, who uses videos of previous patients to help new patients understand the benefits, drawbacks, and impact of various treatments.
“A lot of airway surgeries can have a pretty strong impact on voice, and that’s an important thing for patients to think about ahead of time,” he said. “As much as I can use words and numbers to describe function, video can communicate the patient experience in a more holistic, integrated way. I feel like it’s more informative for patients to hear other patients talk.”
In many otolaryngology practices, patients sign a photo, imaging, and recording consent during their initial visit. Patients may or may not fully read or understand the consent form; when confronted with a pack of papers or handed a digital tablet, many people simply sign without carefully reading the material. Additionally, forms may not provide a lot of information or clarity regarding how images and recordings may be used. Patients who sign a consent that states, “I consent to the photographing, filming, or videotaping of the treatment or procedure for educational or diagnostic use” may not understand that their image could be shared with other patients, which could include their neighbors or bosses, or at an international medical conference.
Consent forms that ask patients to specify when and how their images and recordings may be shared are better. For instance, this type of form might say, “I consent for these photographs to be used in medical publications, including medical journals, textbooks, and electronic publications,” “I agree for my image to be shown for teaching purposes AND to be used for my medical record but NOT FOR medical publication,” or “I agree to use of my image for medical records ONLY” (Genet Med. doi: 10.1097/00125817-200011000-00010).
Whatever forms are used, physicians or office staff should discuss possible uses of photos, videos, and audio recordings with patients, using clear, everyday language.
“In my facial plastics practice, I have a release form that outlines different ways photos may be used and lets the patient choose. I have them read and sign the release form with me there to make sure any questions are answered,” said Henry Chen, MD, founder of Chen Facial Plastic Surgery in Beverly Hills, Calif.
Although it’s always smart for the physician to discuss photo use with patients, it’s good practice to have another staff member obtain written consent, if possible. “Patients may feel a bit like they have to say yes if their surgeon is the one doing the consent process,” Dr. Miller said.
Videos and still photographs are a mainstay of how we assess disease, communicate with other providers, and assess treatment response …. [They] offer powerful, unambiguous representations of the clinical scenario. — Alexander Gelbard, MD
The timing of the conversation matters. While it’s critical to get imaging consent and informed consent prior to treating a patient, asking patients if they’re willing to share their experience with others via photos and recordings before they’ve even undergone treatment can be a bit much. Dr. Gelbard doesn’t ask patients if they’re willing to make or share a video recording discussing their experience until after patients have recovered.
“I feel like it would be a bit of a heavy burden while they’re still trying to recover,” he said. “We usually wait until they’re through the acute healing phase and are working on recovery.”
Use Caution When Sharing with Fellow Physicians
Patient images and recordings are a crucial part of physician education. But while medical journals and conferences have long required physicians to provide evidence of patient consent, technological advances have created complications here, too.
As noted in a 2020 article published in Case Reports in Women’s Health, medical journals were once only available via academic libraries; now, most journals are accessible online, greatly increasing the number of people who may encounter images included in journal articles. Furthermore, many journals use an open-access publishing model and Creative Commons licenses, which allow free and unrestricted use of the works they publish (PLOS. https://journals.plos.org/plosmedicine/s/licenses-and-copyright. Case Rep Womens Health. doi: 10.1016/j.crwh.2020.e00194).
De-identifying patient images is helpful, but not as helpful as many think. Blurring or blacking out the eyes in facial photos cannot protect patient privacy. “There are already AI programs that can unblur them,” Dr. Chen said. Protected health information (PHI) may be included in pixelated metadata. Online search engines can extract and index patient identifiers from slide presentations and PDF files that were believed to be anonymized. That’s likely what happened to one plastic surgeon who was found liable and ordered to pay $18,000 in damages to a former patient who signed a photo consent authorizing photographs of her breasts before and after surgery. The photos were used on the physician’s website with consent, but, unfortunately, the patient later learned that these photos came up in online searches for her name even though the patient’s name did not appear on the physician’s website (Plast Reconstr Surg Glob Open. doi: 10.1097/GOX.0000000000005162).
To protect against inadvertent sharing of PHI, physicians should adopt standardized file naming protocols that do not include patient identifiers (such as name or birth date). Another option is to use third-party image processing software that can cut out PHI and only save and use the image data (Medality. https://mrionline.com/blog/protecting-patient-information-in-medical-presentations/).
Caution and care should also be used when seeking advice from other physicians. Unfortunately, in the context of peer advice, it’s “rare—if ever—that a proper release form is obtained where the physician fully explained to the patient the risks of disclosure and what the photo would be used for,” Dr. Chen said.
Help Patients Understand AI
As artificial intelligence continues to advance, otolaryngologists should “have conversations with their patients around the expectations patients should have about how their data—even innocuous data like radiographic images—are used and stored,” Dr. Rangarajan said. “I think we need to be more forthright about patient consent. Our conversations need to detail how their data may or may not be used and offer patients an opportunity to opt out, and that discussion probably needs to happen in a more open fashion than simply being given your HIPAA release when you sign in at the front desk.”
Though it’s difficult to predict exactly how images and recordings may be used in the future, it’s important to let patients decide if their data becomes part of large datasets that could be used to create new technology and tools.
“When we consent people, we have to acknowledge the fact that we do not necessarily know how this data will be used in the future,” Dr. Naunheim said, as it’s currently impossible to predict what kind of AI tools may be built from data sets. “Informing people that their data will be used and that they can withdraw their consent to have their data used at any time is a standard principle. But actually implementing withdrawal of consent could be a very messy prospect if their data was part of a dataset that was used to create a product.”
The need for high-quality images and recordings to develop AI tools can also create conflict, as physicians must balance patient privacy with the need for diverse data to build effective clinical tools. “Our future AI models are only as good as what we put into them, so we must ensure that our data sets are diverse and non-biased,” Dr. Rangarajan said. But despite the great need for representative data, physicians must respect patients’ right to consent.
“When we are working with people who may not have a strong understanding of what AI is or how it may be used, we need to do extra work to make sure that patients understand, to ensure we’re not taking advantage of marginalized communities,” Dr. Rangarajan said.
These conversations can be challenging, especially because advancements in technology continually reshape what’s possible and how data may be used.
“We say we will keep everything completely confidential and de-identified and anonymized as possible, but although it’s very unlikely in this day and age that someone can identify a person from a picture of their throat, who knows what technology will be like in 30 years?” Dr. Naunheim said. “Having conversations about the ambiguity of the future power of AI is difficult. We don’t have a good way of doing that yet.”
Maintaining patient privacy while harnessing the potential of medical imagery and AI is a complex but essential responsibility for otolaryngologists. As technology advances, so does the need for clear communication with patients about how their images and data may be used now and in the future. By prioritizing transparent consent discussions, physicians can safeguard trust while continuing to innovate and improve patient outcomes.
Jennifer Fink is a freelance medical writer based in Wisconsin.