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

1
Contextual Integrity and Informed Consent
Providing Web Access to Images of Health and
Medicine

• Phoebe Evans Letocha
• The Johns Hopkins Medical Institutions
• pletocha_at_jhmi.edu

2
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

3
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

4
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

5
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

6
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.

7
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

8
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

9
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

2009 SAA Privacy Issues for Photographs/ Film of
Health and Medicine
10
Patient authorization form

• Informed consent
• Specify acceptable use
• Ability to revoke authorization
• Authorization not a condition for treatment

2009 SAA Privacy Issues for Photographs/ Film of
Health and Medicine
11
Role-based access A model for the Digital Age

• Helen Nissenbaums 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

12
Harvards 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

2009 SAA Privacy Issues for Photographs/ Film of
Health and Medicine
13
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

2009 SAA Privacy Issues for Photographs/ Film of
Health and Medicine
14
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

15
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
16
Redacting PHI in photographs and filmWhat is
protected

• Identifiable images of patients when
  authorization/informed consent to release is in
  doubt
• specific medical conditions
• specific treatment
• diagnosis specific setting

17
Identifying PHI in photographs and
filmAcceptable 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

18
General waiting room or ward scenes without
diagnosis

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

19
Vaccination and preventive medicine

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

20
Healthy child exams

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

21
Non-specific use of equipment, eg glasses,
wheelchair

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

22
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

23
National Museum of Health and Medicine
24
NMHM _at_ flickr
25
NLMs Images from the History of Medicine
26
CDC Public Health Image Library
27
AMCMA online catalog
28
AMCMA website
29
AMCMA _at_ flickr
30
AMCMA _at_ YouTube
31
Re-use of archival images
32
Dermatology Image Atlas
2009 SAA Privacy Issues for Photographs/ Film of
Health and Medicine
33
Dermatlas
2009 SAA Privacy Issues for Photographs/ Film of
Health and Medicine
34
Dermatlas Combating unintended use by
pornography seekers
2009 SAA Privacy Issues for Photographs/ Film of
Health and Medicine
35
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

36
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.htmlfn33
• 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. 79119, 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/

37
References

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

38
Presenter

• Phoebe Evans Letocha
• Collections Management Archivist
• pletocha_at_jhmi.edu
• Alan Mason Chesney Medical Archives
• of the Johns Hopkins Medical Institutions