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Editorial |

Protection of Patients’ Right to Privacy in Clinical Photographs, Video, and Detailed Case Descriptions FREE

June K. Robinson, MD1; Ashish C. Bhatia, MD1; Jeffrey P. Callen, MD2
[+] Author Affiliations
1Department of Dermatology, Northwestern University Feinberg School of Medicine, Chicago, Illinois
2Department of Medicine, Division of Dermatology, University of Louisville, Louisville, Kentucky
JAMA Dermatol. 2014;150(1):14-16. doi:10.1001/jamadermatol.2013.8605.
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Published online

Dermatology, one of the most visually oriented fields of medicine, relies on inspection of the skin by a physician trained to perceive and interpret the skin clues to be able to make a diagnosis and demonstrate response to treatment. Clinical photographs are the way records are kept; clinical processes are compared over time, and communication occurs with our colleagues to teach about dermatologic processes and obtain consultations. Such communication needs to be mindful of protecting the patients’ right to privacy. Collecting information about patients in the course of conducting research can present unique concerns about maintaining patient privacy and anonymity. While these concerns about research are usually mitigated by submission of research protocols and amendments to those protocols to the institutional review board with the requirement of deidentification of data, case reports and observations do not come under the purview of the institutional review board; thus, it is important for clinicians to understand how to protect the privacy of their patients when publishing case reports. While identifying information can easily be removed from self-reported surveys, laboratory tests, and pathology data, photographs and videos of patients are not easily deidentified, and often detailed descriptions of patients are needed for reports to be scientifically complete, clinically meaningful, and educational.

Photographs that include an ear, eye, facial hair, or skin lesion may not seem to reveal the person’s identity to the reader, but the test of anonymity is whether the patient could recognize his or her own image. This can be a difficult test to pass. Even a birthmark, tattoo, jewelry, clothing, nail polish, or unique mole included in a photograph might reveal the patient’s identity. The Figure shows 3 examples of images that required patient permission to publish.13 In the past, attempts at concealing the identity of patients included masking, which consists of placing bars over the eyes or pixelating the areas over the eyes. Masking of facial images was abandoned at least 2 decades ago.46 Now the standard is careful cropping to remove identifying features while attempting to preserve the elements of the clinical process that is being conveyed. This can prove to be challenging if the image is not properly staged and framed. In situations in which patient anonymity cannot be guaranteed, authors must abandon attempts to deidentify clinical photographs and related text description and ask permission from the patient to publish their likeness and other identifying information. In 1995, the International Committee of Medical Journal Editors released a position paper stating that identifying information, such as photographs, should not be published unless the publication is necessary for scientific purposes and the patient has granted informed consent.7

Place holder to copy figure label and caption
Figure.
Examples of Images Requiring Patient Consent to Publish

A, Unique tattoo of the upper arm (from Pohl et al1). B, Unique nail treatments (from Grimes et al2). C, Jewelry identifies the subject, who gave permission for publication of the image (from Cyrus et al3).

Graphic Jump Location

Proper staging and framing of a patient prior to taking a photograph or recording video is key. The physician should have the patient remove identifying and visually distracting jewelry and clothing.8 If certain articles cannot be easily removed, they may be draped with a solid-colored drape such as a surgical towel, paper drape, or photography bib. Written informed consent needs to be obtained prior to taking any patient photographs, even if the intention is not to publish the images. As part of this consent, the patient should be asked to give permission to have the image published in a medical journal. The permission should give the patient the right to review the manuscript or waive the right to review the manuscript, which should include any photographs or videos. JAMA Dermatology, JAMA, and the other JAMA Network journals require patients to sign a JAMA Network informed consent form prior to publication for any patients who are identifiable in text descriptions or photographs.6 Since authors may not be able to predict which journal a manuscript will be submitted to at the time the initial informed consent is obtained, the need for patient consent may be perceived as an unnecessary burden. If the author chooses to wait until the manuscript is completed, it may be difficult to locate and contact patients to obtain informed consent after the fact. Furthermore, if the patient dies, then the next of kin will need to be asked to sign the release, which can be difficult for the physician.

While authors may wish to rely on standard institutional informed consent forms, such as those used for surgical procedures, with a few incorporated sentences regarding photographs, the editorial staff of JAMA Dermatology frequently note omissions on these standard permission forms. To summarize the key points, all patients identifiable by their photographs, detailed case descriptions, or pedigrees in a manuscript should be given the opportunity to review the manuscript and materials in which they are included or waive their right to do so. In addition, the permission form must include provisions for the publication of the material on the Internet, and this permission must be irrevocable. Obviously, once an article about a patient is published, the identifying information and material cannot be unpublished.

Whenever a physician has a question about the need to obtain informed consent for publication of photographs, video, or descriptive text of a patient, the physician should act conservatively and strive to preserve the patient’s privacy and anonymity. If identifying information is essential to the clinical message or scientific importance of the article, permission from the patient (or parents of children) is needed. The completion of a specific informed consent form for patient clinical photographs and other identifying material to be included in JAMA Dermatology may seem like a burden, but this requirement serves to protect the interests of all involved. Additional information about this policy is available in the JAMA Dermatology Instructions for Authors.9 The JAMA Network Patient Permission Form granting authors permission to publish patients’ photographs, video, and other identifying information may be obtained from the JAMA Dermatology web site at http://files.jamanetwork.com/derm/PatientConsent.pdf. We encourage authors to contact us in advance by sending an email to jamaderm@jamanetwork.org if they have any questions about this policy before submitting their manuscripts.

ARTICLE INFORMATION

Corresponding Author: June K. Robinson, MD, Northwestern University Feinberg School of Medicine, 676 St Clair St, Ste 1260, Chicago, IL 60611 (june-robinson@northwestern.edu).

Published Online: December 4, 2013. doi:10.1001/jamadermatol.2013.8605.

Conflict of Interest Disclosures: None reported.

Disclaimer: Drs Robinson and Callen are editors of JAMA Dermatology. Dr Bhatia is the web editor of JAMA Dermatology.

Pohl  L, Kaiser  K, Raulin  C.  Pitfalls and recommendations in cases of laser removal of decorative tattoos with pigmented lesions: case report and review of the literature. JAMA Dermatol. 2013;149(9):1087-1089.
PubMed   |  Link to Article
Grimes  PE, Hamzavi  I, Lebwohl  M, Ortonne  JP, Lim  HW.  The efficacy of afamelanotide and narrowband UV-B phototherapy for repigmentation of vitiligo. JAMA Dermatol. 2013;149(1):68-73.
PubMed   |  Link to Article
Cyrus  N, Stavert  R, Mason  AR, Ko  CJ, Choi  JN.  Neutrophilic dermatosis after azathioprine exposure. JAMA Dermatol. 2013;149(5):592-597.
PubMed   |  Link to Article
Slue  WE  Jr.  Unmasking the lone ranger. N Engl J Med. 1989;321(8):550-551.
PubMed   |  Link to Article
Riis  P, Nylenna  M.  Patients have a right to privacy and anonymity in medical publication. JAMA. 1991;265(20):2720.
PubMed   |  Link to Article
Iverson  C, Christiansen  S, Flanagin  A,  et al. Protecting research participants' and patients' rights in scientific publication. In: Iverson  C, Christiansen  S, Flanagin  A,  et al, eds. AMA Manual of Style: A Guide for Authors and Editors.10th ed. New York, NY: Oxford University Press; 2007.
International Committee of Medical Journal Editors.  Protection of patients’ rights to privacy. BMJ. 1995;311(7015):1272.
PubMed   |  Link to Article
Bhatia  AC.  The clinical image: archiving clinical processes and an entire specialty. Arch Dermatol. 2006;142(1):96-98.
PubMed   |  Link to Article
Instructions for Authors. JAMA Dermatology. http://archderm.jamanetwork.com/public/instructionsForAuthors.aspx. Accessed October 13, 2013.

Figures

Place holder to copy figure label and caption
Figure.
Examples of Images Requiring Patient Consent to Publish

A, Unique tattoo of the upper arm (from Pohl et al1). B, Unique nail treatments (from Grimes et al2). C, Jewelry identifies the subject, who gave permission for publication of the image (from Cyrus et al3).

Graphic Jump Location

Tables

References

Pohl  L, Kaiser  K, Raulin  C.  Pitfalls and recommendations in cases of laser removal of decorative tattoos with pigmented lesions: case report and review of the literature. JAMA Dermatol. 2013;149(9):1087-1089.
PubMed   |  Link to Article
Grimes  PE, Hamzavi  I, Lebwohl  M, Ortonne  JP, Lim  HW.  The efficacy of afamelanotide and narrowband UV-B phototherapy for repigmentation of vitiligo. JAMA Dermatol. 2013;149(1):68-73.
PubMed   |  Link to Article
Cyrus  N, Stavert  R, Mason  AR, Ko  CJ, Choi  JN.  Neutrophilic dermatosis after azathioprine exposure. JAMA Dermatol. 2013;149(5):592-597.
PubMed   |  Link to Article
Slue  WE  Jr.  Unmasking the lone ranger. N Engl J Med. 1989;321(8):550-551.
PubMed   |  Link to Article
Riis  P, Nylenna  M.  Patients have a right to privacy and anonymity in medical publication. JAMA. 1991;265(20):2720.
PubMed   |  Link to Article
Iverson  C, Christiansen  S, Flanagin  A,  et al. Protecting research participants' and patients' rights in scientific publication. In: Iverson  C, Christiansen  S, Flanagin  A,  et al, eds. AMA Manual of Style: A Guide for Authors and Editors.10th ed. New York, NY: Oxford University Press; 2007.
International Committee of Medical Journal Editors.  Protection of patients’ rights to privacy. BMJ. 1995;311(7015):1272.
PubMed   |  Link to Article
Bhatia  AC.  The clinical image: archiving clinical processes and an entire specialty. Arch Dermatol. 2006;142(1):96-98.
PubMed   |  Link to Article
Instructions for Authors. JAMA Dermatology. http://archderm.jamanetwork.com/public/instructionsForAuthors.aspx. Accessed October 13, 2013.

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