Keywords: Patient generated health data, medical selfies, medical photography, clinician-patient relationship, patient engagement.
Citation: Burns K. Digital photography and the medical selfie. J Participat Med. 2015 Feb 11; 7:e3.
Published: February 11, 2015.
Competing Interests: The author has declared that no competing interests exist.
Digital photography has become an essential tool in modern medicine. However, unlike other imaging techniques, photographs can identify a patient and are often taken when a person feels vulnerable. Images and videos are currently used across most areas of medicine where visual pathology requires documentation. They are particularly valuable in dermatology, rheumatology, ophthalmology, for wound tracking, burns management, occupational and physiotherapy and in surgical specialties. However, medical images and videos are highly sensitive medical records that, while they have great potential for medical use, also have the potential to compromise patients’ privacy and confidentiality.
In the United States a recent case with tragic outcomes has highlighted the importance of potential misconduct involving photography. It has been widely reported that a gynecologist in a major hospital surreptitiously took photographs and videos with a pen camera without the written permission of women attending his clinics and kept them on his personal computer. A complaint led to the discovery of the hundreds of images and videos, and in addition to claims of “unnecessary examinations,” the hospital settled a $190 million dollar lawsuit with over 8000 women. Just after the discovery of the images the specialist took his own life. Few cases of misconduct involving images are this dramatic and most result from misunderstanding informed consent in relation to medical photography. Consent and use issues are also confounded by the ubiquity of image distribution in today’s era of the “selfie” and social media. However this story demonstrates the seriousness and impact of medical photography “gone wrong” and serves as a reminder that the capturing and use of medical images and videos, especially on personal mobile devices, requires strict control.
Most physicians use a smart phone as part of their workflow to improve communication with other health professionals, to access information in textbooks, use medication calculators and, sometimes, to aid diagnosis by taking visual records of patients. The majority of medical photography on smart phones occurs when use of a professional medical photographer is not practical or possible. The pictures are generally used for the benefit of the patient and are often sent to clinicians when they are not available at the time of consultation.
Better health care outcomes for patients and improved efficiency are the premise of the new photo-taking smart phone application (app) Peek Vision, created to do basic eye health assessments in remote areas or developing nations. The app essentially replaces a multidisciplinary medical team and $150,000 worth of equipment with a local health worker on a bicycle armed with a $450 mobile phone and a $5 3D printed attachment. Once the photographs and medical information are captured the data is securely sent to an ophthalmologist or image grader to perform an assessment and the ophthalmic surgeon can then review the cases and help determine the requirement for surgical intervention. This process is not only cost effective, but offers the benefit of expanding the capacity of local health workers in underserved communities. The researchers are also investigating the use of non-health professionals to make clinical assessment of the images based on binary decision questions that relate to the image review that is guided by the specialist. This opens up an interesting chapter in the use of photography in medicine by non-health professionals and coincides with the first mainstream reports of patients taking “medical selfies.”
The democratization of digital photography and the availability of cameras in smart phones have given patients the power to document for themselves. One of the first recorded cases of a “medical selfie” occurred in 2004. A woman suffered from a transient rash which was never present during her specialist consultations. When the rash suddenly appeared on a shopping trip the woman used her mobile phone to capture the rash that was subsequently diagnosed as systemic lupus erythematosus. Ten years later in June 2014 a 49-year old Canadian woman took a selfie video of facial numbness and slurred speech, which doctors used to correctly diagnose as a stroke after previous tests had failed to detect her condition. Indeed participatory medicine and patient generated health data (PGHD) experts believe the smart phones, high internet connectivity and the mobile app revolution allowing patients to monitor themselves will shape the future medicine and can help shift the focus from disease “fixing” to prevention. The incentives offered by the Office of the National Coordinators for IT through the Meaningful Use program in the US aims to improve patient engagement through increased use of telehealth, the electronic patient record and the acceptance of PGHD. This means that personally-controlled photography is anticipated to become a feature of future medical practice.
New research conducted in the United Kingdom reviewed patient-initiated photography taken to general practice clinics and noted that patients produced information that was highly relevant for the clinical consultation and empowered patients by illustrating their narratives. In addition images taken by patients have been linked to recognition of healthy behaviors with one recent study noting that patients who regularly took images of their moles were more aware of sun-smart activities. It could be argued that the evidentiary nature of photographs reduce recall bias, selective symptom reporting and improves communication between the doctor and patient. Indeed one of the most powerful aspects of photography in medicine is its ability to clarify reasons for medical decision making and improve communication between health care professionals, patients and the patients’ support network.
Despite the potential for images to aid diagnosis, act as a discussion point, reduce recall bias, improve communication, and instigate the recognition of healthy behavior, “medical selfies” have legal implications. Health information managers are supportive ofincluding this data in medical records. However, legal and data compatibility issues have been cited as the main barriers to the incorporation of PGHD into the clinical record. Ultimately each jurisdiction must navigate the complex networks of legislation, institutional policy and codes of practice to develop a solution that suits the needs of their patients.
Patient generated health data – especially medical photography – can be very powerful when channeled and used to engage patients. More research is required to establish an evidence base for its use in behavior change, how the images affect the patient and their personal networks, how the data can be safely incorporated into the electronic medical record and what affects this might have on health care institutions. While the inclusion of PGHD into the clinical record poses challenges, if institutions choose to ignore the participatory medicine revolution they risk losing a highly valuable asset in medicine – the patient themselves. In addition, engagement is about more than just the use of electronic tools; it’s also about how institutions, individual practitioners, health information managers, policy and IT all focus to support the patient in developing their role as a co-producer. Perhaps the most useful research will be around how patients utilize this data to meet their own health care needs and share with support networks. Indeed the act of capturing and controlling health data promotes the patient beyond the passive recipient to an active co-creator of modern health care.
- Creighton S, Alderson J, Brown S, Minto CL. Medical photography: Ethics, consent and the intersex patient. BJU International. 2002;89(1):67-72. ↩
- Burns K, Belton S. Clinicians and their cameras: policy, ethics and practice in an Australian tertiary hospital. Australian Health Review. 2013;37(4):1. ↩
- A timeline of events related to the investigation of Nikita Levy, M.D. 2014. Available at: http://www.hopkinsmedicine.org/news/Nikita_Levy.html. Accessed December 24, 2014. ↩
- Shapiro M, Johnston D, Wald J, Mon D. Patient-generated health data: A white paper. Research Triangle Park, NC, USA: Office of Policy and Planning Office of the National Coordinator for Health Information Technology;2012. ↩
- Tan L, Hu W, Brooker R. Patient-initiated camera phone images in general practice: A qualitative study of illustrated narratives. British Journal of General Practice. 2014;64(622):e290-e294. ↩
- Boyce Z, Gilmore S, Xu C, Soyer HP. The remote assessment of melanocytic skin lesions: a viable alternative to face-to-face consultation. Dermatology. 2011;223(3):244-250. ↩
- Archer A, Bolser B, Crocker J, Miller J, Parman CC, Warner D. Managing unsolicited health information in the electronic health record. Journal of AHIMA / American Health Information Management Association. 2013;84(10):70-73. ↩
Copyright: © 2015 Kara Burns. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.