Use of Sensitive Materials
The American Academy Family Physicians (AAFP) recognizes the importance of confidentiality and privacy in patient care regardless of the country or setting in which it is being provided. Only in a setting of trust can a patient share the private feelings and personal history that enable the physician to comprehend fully, to diagnose logically, and to treat properly and respectfully. At the same time, AAFP recognizes the need for physicians to document and report on various medical conditions and patient populations in order to educate and promote world health initiatives. While AAFP generally encourages these types of reporting activities, it is important to take the following considerations into account before using photos, videos, medical histories or other information about individuals in any presentations, publications or on-line posts, including any such images or information about individuals residing outside the United States:
Many countries and regions around the world have specific laws, regulations, professional standards and other rules regarding the recording, copying, storage, disclosure, display and/or distribution of materials and information, such as photos, videos and medical information. These rules may prohibit, restrict or otherwise control a particular use that you want to make of a specific image or item of information. For example, copyright and privacy laws may prohibit the publication of certain photographs without consent; child protection laws may prohibit posting certain photographs or videos of children on-line, regardless whether consent has been obtained; and health information protection laws may restrict the dissemination of specific types of medical information.
The considerations discussed here are not intended to provide or substitute for legal advice, and they do not encompass or address specific laws, regulations, professional standards or other rules that may apply within any given country or region, or to any specific image or use. Because application of those rules is very fact specific – taking into consideration the countries involved, the specific content of the image or other item, and the particular usage desired – it is important to seek legal counsel as to the rules that apply to any given specific situation.
Concerns regarding confidentiality and privacy apply to a broad array of materials that display or otherwise disclose information about a particular individual, including photographs, videos, voice recordings, patient records, patient history and location. These concerns apply not only to patients but to other individuals who may be depicted or described in the materials, such as parents or relatives of a patient or other community members. It should also be understood that confidentiality and privacy concerns apply to any settings in which clinical activities occur, even if those activities are conducted in a public place. Any communication to others (presentation, display, publication, distribution) beyond those assisting in the diagnosis and treatment of the specific patient is of concern. Thus, while usage on the Internet or other public dissemination may create heightened concerns, lectures or journal articles with restricted access to the medical community may also require consideration of confidentiality and privacy issues.
While a patient's acquiescence to the taking of his or her photo or other image may serve as implied consent to use the image for clinical diagnosis and treatment, it does not imply consent to sharing that image publicly (such as in a publication or on the Internet) or otherwise communicating the image beyond those involved in the diagnosis and treatment of the patient.
The best practice is to obtain express informed consent to include the photo, video or other image or recording of an individual in any type of communication (lecture, presentation, publication, on-line article, blog post, etc.) beyond those involved in the diagnosis and treatment of the patient. Informed consent requires full disclosure to the individual of how you intend to use and communicate the image or recording, including, for example, if it will be posted to the Internet and any steps you intend to take to de-identify the image (discussed below). If the individual is a child, the consent of the child's legal guardian should be obtained.
Appropriate consent for the taking or using of photographic or other images can be very different in various cultural, geographic and political settings, and may indeed not be feasible or possible in some specific settings. When using such images, even with the subject’s consent, one should consider and prioritize the maintenance of patient decency and dignity, present a patient’s culture, ethnicity and country in an honest and dignified light, and maintain professionalism. Particularly sensitivity is needed for those most vulnerable, including children, disabled persons and persons not living in freedom (e.g. refugees, prisoners, and victims of war). Safety and protection of the subjects and their personal information and images should be of primary importance. In other words, do not use images that would potentially jeopardize the safety of the individuals involved.
A variety of power differentials exist between those capturing images or other recordings and the subjects of those images or recordings (e.g., provider status, education status, political status, socio-economic differences). Those power differentials can interfere with the ability to obtain true and free consent, especially when working in global health across cultural contexts, geographic boundaries, and within complex power dynamics. In addition, images of certain physical manifestations of illness can result in embarrassment or ridicule to the individuals involved or risk linking a patient's identification with medical information. In giving consent, be aware that a subject may not fully realize these risks and the potential ramifications. Also keep in mind that, once an image or other recording is posted to the Internet or otherwise distributed outside the direct control of the physician, the image may be used by others in a manner that violates the intent of the original consent.
For these reasons, even when informed consent is obtained, it is the best practice to "de-identify" any images and other recordings so that they cannot be recognized as belonging to the individual, particularly where the image or recording is being distributed beyond the immediate control of the physician. For instance, while a physician may decide to include photos of individuals in a Power Point presentation being made in person to a group of physicians without blurring the faces or taking other action to de-identify the individuals in the photos, if that Power Point presentation is being recorded for inclusion on a DVD or posted to the Internet or if the Power Point presentation is being printed and handed out to participants, the physician should de-identify the photos used in those copies.
The appropriate measures needed to de-identify a particular image or recording will depend on the content of the item and the information that you want the item to convey. In all events, any specific identifiers such as patient name, medical record number and date of birth must be removed or redacted/blocked out. For non-facial maladies, it is advisable to obscure the face and any distinguishing physical characteristics in the images. For facial maladies, the facial images should be cropped so that the entire face is not showing, patient’s eyes and nose are blocked out, etc., to the extent reasonably possible to avoid recognition. Similarly, voice recordings should be altered to prevent obvious identification by voice.
In order to preserve confidentiality and protect the privacy of patients, it is important to de-identify descriptions of the patient and his or her circumstances in any presentations or other communications beyond those involved in the diagnosis and treatment of the patient. Examples of ways to de-identify this type of information include: (i) using a pseudo-initial and pseudo-age in descriptions and presentations; (ii) altering key details that identify the patient, including gender and age in some cases, to obscure their specific identity; and (iii) omitting details about the patient’s location, family members, clinic attendance, personal providers, or physical appearance.
Institute standards within your organization for maintaining accurate records of the informed consent obtained from individuals for the use of images, recordings and other materials or information, including the nature and scope of the consent. Educate your personnel on the importance of obtaining informed consent and of de-identifying images, recordings and other patient information. Also, limit access to the images, recordings and other patient information to authorized personnel and monitor the use of those items to avoid deliberate or inadvertent improper uses. If any improper use of your images or other information is discovered, take quick and reasonable action to stop any further improper use or dissemination.