Figure 1: Medical Education Tool Miracle or Patient Privacy Nightmare?

Created in 2013, Figure 1 is a social networking application that is quickly becoming known as the “Instagram for doctors.”  The program allows health care professionals to upload patients’ images, caption the photo, and begin a discussion about diagnoses and treatments. The app is designed to be an educational tool, and the photos posted are almost exclusively of difficult-to-diagnose medical phenomena.  This social media platform is available to all individuals, regardless of their professional career.  Figure 1’s services are available in over 100 countries, and the app itself has gained more than 150,000 users who share an estimated one million images a day.

Patient privacy is at the forefront of concerns for the company.  Health care professionals who wish to post something must first remove identifying patient details from the photo. The app has a number of tools to do so, such as a face-blocking algorithm and a manual blocking system. The individual identifiers that need to be removed from photos are derived directly from the Health Insurance Portability and Accountability Act of 1996 (HIPAA) with the additional requirement of removing full-face photographic images and any comparable images. Since the images do not have identifying details about patients and are not attached to any patient information, the photos do not fall under privacy regulations around the world. This also means that any breaches of protected health information from Figure 1’s photos are not subject to HIPAA reporting requirements.

Patient consent is also mandatory for images to be displayed in the app.  The consent form is presented as an in-app “tap, type, and sign” method that patients sign with their finger. The forms have been tailored to comply with jurisdictional and specific countries’ laws. The example language is fairly standard and allows patients to authorize users of the app to “capture, release and share de-identified images of portions of [their] body.”

A final checkpoint occurs before the image is shown to all users.  Figure 1’s medical officer and a team of moderators perform a review of each image. This check is to ensure all identifying information has been properly removed.  However, if an image, comment, or description is found that may identify a patient, users can flag the image. Once flagged, the picture is immediately removed until the medical officer reviews it, and if an image is deemed to potentially identify a patient, Figure 1 immediately and securely destroys it.

Figure 1 has allowed physicians, nurses, and students to share information regarding rare medical disorders in a way that was not possible five years ago.  However, the app has raised concerns for some regarding patient consent as well as patient privacy.  Although health care professionals are the only ones allowed to post photos and comments, some have found the verification process for this is almost non-existent.  One individual identified himself as a physician, but found that no verification took place before he was allowed to post or comment. This raises the question of whether non-physicians may take advantage of this feature and begin posting images of patients without truly obtaining their consent.  It also begs the question if the consent form is adequate due to the lack of patient identity verification and a more detailed signature process.

Additionally, taking images via the doctors’ phones may raise further privacy concerns.  The app allows users to take photos and upload them through the app; however, it does not necessarily mean physicians are not also taking photos with their phone’s personal camera.  If healthcare professionals were to do so and the photo contained identifying information, the risk of that information being distributed is significantly increased and could potentially have substantial harmful effects for the patient. Moreover, some individuals are concerned with whether the images are truly de-identified. One might ask if a patient, or someone who knows the patient, can individually identify his or her own appendage, condition, or injury, if the app is actually de-identifying the photo in line with the standards of HIPAA.

To further question the app’s security, some wonder what precisely “consent” means in this context.  It is not known whether patients understand exactly what they are consenting to, and whether the app’s definition of consent meets the patient’s definition of this concept.  Although it is known what information is necessary for a patient’s consent for medical procedures, some have identified that gaining adequate informed consent for the app is much trickier.  Certain commenters believe the app is, in effect, taking conversations between healthcare professionals that would happen in private settings, and moving those conversations to a semi-public place. This has created a dichotomy between a potentially sensitive conversation with the casualness of social media, which causes the comments to border on inappropriate and jarring. If patients knew their photo and personal condition were causing these types of conversation, the patients may second-guess their participation in the program.  This is especially troublesome in the case of children in which parents are consenting for their children to be subject to this type of scrutiny.

Only time and further research will tell if Figure 1 is the medical research tool of the future, or if will only cause more headaches for patient privacy and autonomy.  In the meantime, healthcare professionals will continue to post pictures to receive answers to their medical questions and hope to gain as many favorites as they can get.  

Lana Smith graduated from the University of Michigan with honors in December 2012 with a Bachelor of Arts Degree in International Studies - Comparative Cultures & Politics.  She is pursuing her law degree and a health law certificate from DePaul College of Law.  She is the Co-Director of Outreach & Recruitment of the Jaharis Health Law Institute Student Board, and an active Health Law Fellow.  She would like to focus her career on medical ethics and health policy after graduating in May 2016.