Contextual Integrity and Informed Consent: Providing Web Access to Images of Health and Medicine...

Contextual Integrity and Informed Consent: Providing Web Access to Images of Health

and Medicine Phoebe Evans LetochaThe Johns Hopkins Medical [email protected]

2009 SAA: Privacy Issues for Photographs/ Film of Health and Medicine

Images of Health and Medicine

Primary use for education, healthcare, and research

Utilize advances in photographic technology from 19th century photomicrography and portraiture to 21st century digital imagery


Risks to individual privacy

Exposure of images of the body may be source of embarrassment and discomfort

Revelation of health condition may be source of discrimination

Association of individual with images may be basis for societal stigmatization

Violations of privacy may have negative impact on property rights


Rights to Health Images of Celebrities Right of Publicity

Based in state law Property right

controlling commercial use

Privacy interests to images of deceased celebrities held by their estates Elvis Presley Dale Earnhardt Farrah Fawcett Michael Jackson


HIPAA Privacy Rule and Archives Defines criteria for protecting individual

privacy Application to archives dependent upon

relationship to HIPAA covered entity Provides an administrative framework for

managing access and use of archival information in the Digital Age

Allows role-based access to archival records

Protected Health Information

Any information in any form or medium, related to the past, present, or future physical or mental health or condition of an individual; the provision of health care to an individual; or payment for health care; that identifies or can be used to identify the individual; and that is transmitted or maintained in any form or medium, including electronic, oral, or paper, by a covered entity.


Set of 18 Identifiers that must be removed to de-identify health information names geographic subdivisions smaller

than a state all elements of dates (except

year) telephone numbers facsimile numbers electronic mail addresses social security numbers medical record numbers health plan beneficiary numbers account numbers certificate/license numbers

vehicle identifiers and serial numbers

device identifiers and serial numbers

web universal resource locators (URLs)

internet protocol (IP) address numbers

biometric identifiers full-face photographic

images Any other unique identifying

number, characteristic, or code, unless otherwise permitted by the Privacy Rule for re-identification

Implications of HIPAA for online access to archival images Online publication of archival images

containing PHI is a form of re-disclosure that requires individual authorization

HIPAA Privacy Rule covers PHI of the deceased as well as the living

PHI exists in any format or media, including digital images



Options for Online Access

Authorized access Individual authorization based on informed

consent Role-based access through institutional

authorization or waivers of authorization Screen and redact protected information

As part of processing and description of holdings

Screen on demand at time of request for access Reuse of previously published images


Patient authorization form

Informed consent Specify acceptable

use Ability to revoke

authorization Authorization not a

condition for treatment


Role-based access: A model for the Digital AgeHelen Nissenbaum’s Construct of Contextual Integrity Takes into account the context-relative

informational norms Modeled on security controls for computer systems Designates roles for users Limits access to authorized users Takes into account role of users and need for

information rather than restricting information itself


Harvard’s Visual Information Access

Regulation of patient images

Some images not available

Thumbnail views for public web access

Login required for full sized image view of patients


Researchers: Assessing their context Need to know and access the

information Use of the information and

dissemination Plan to protect sensitive information Relationship to the subjects Sensitivity of the information Risk to individuals


Best Practices De-identification

When identity of the individual is not relevant to any research interests

Remove the full face and other 18 identifiers of the individual subject of the PHI, or of relatives, employers, or household members of the individual

Consider the likelihood that remaining information may be used to re-identify a subject of the information


Challenge of redacting photographs

Redaction may diminish content and aesthetic value of the image

AMCMA Item 117075 - [Helen Taussig, examining small girl in wheel chair, circa 1947]


Redacting PHI in photographs and film:What is protected Identifiable images of patients when

authorization/informed consent to release is in doubt specific medical conditions specific treatment diagnosis specific setting


Identifying PHI in photographs and film:Acceptable risks to individuals General waiting room or ward scenes

without diagnosis Vaccination and preventive medicine Healthy child exams Non-specific use of equipment, eg

glasses, wheelchair Previously published images

General waiting room or ward scenes without diagnosis

AMCMA Item 49407 - [Johns Hopkins Hospital, Womens Ward G., circa 1920s]

Vaccination and preventive medicine

AMCMA Item 104984 - [Carolyn Conant Van Blarcom, administering silver nitrate eye drops to infant] 1901-1904

Healthy child exams

AMCMA Item 105005 - [Johns Hopkins Hospital nurses with pediatric patients in the Outpatient Department, circa 1923]

Non-specific use of equipment, eg glasses, wheelchair

AMCMA Item 105028 - [Eight children (patients) with three nurses in playroom, circa 1930s]

Previously published images

Review context of original publication Verify patient consent Consider the sensitivity of the

information and the potential harm in republication

Accept the risk


National Museum of Health and Medicine


NMHM @ flickr


NLM’s Images from the History of Medicine

CDC Public Health Image Library


AMCMA online catalog


AMCMA website


AMCMA @ flickr


AMCMA @ YouTube

Re-use of archival images


Dermatology Image Atlas


Dermatlas


Dermatlas: Combating unintended use by pornography seekers


Archivists responsibilities in posting medical images online

Respect patient privacy in compliance with HIPAA

Ground medical images in context of creation

Promote responsible reuse Be aware of unintended use and take

steps to mitigate risk Monitor reuse of images


References

Connor, J.T.H. and Rhode, Michael “Shooting Soldiers: Civil War Medical Images, Memory, and Identity in America” Invisible Culture, Issue 5, 2003. http://www.rochester.edu/in_visible_culture/Issue_5/ConnorRhode/ConnorRhode.html#fn33

Lawrence, Susan. “Access Anxiety: HIPAA and Historical Research” J Hist Med Allied Sci 62: 422-460, 2007.

Lehmann, Christoph, Cohen, Bernard, and Kim, George. “Detection and management of pornography-seeking in an online clinical dermatology atlas” J Am Acad Dermatol. 54(4):633-7, 2006 Apr.

Nissenbaum, Helen. “Privacy and Contextual Integrity”. Washington Law Review. 79:119, 2004.

Madrigal, Alexis. “Open Data: Rare Trove of Army Medical Photos Heads to Flickr” Wired Science. March 17, 2009. http://www.wired.com/wiredscience/2009/03/medarchives/


References

Mifflin, Jeffrey. “Visual Archives in Perspective: Enlarging on Historical Medical Photographs” American Archivist 70(1): 32-69, 2007 Spr/Sum.


Presenter

Phoebe Evans LetochaCollections Management [email protected]

Alan Mason Chesney Medical Archives of the Johns Hopkins Medical Institutions

Contextual Integrity and Informed Consent: Providing Web Access to Images of Health and Medicine...

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