Privacy and EHR Programs Dr. Alan F. Westin Professor of Public Law and Government Emeritus, Columbia University Director, Program on Information Technology, Health Records and Privacy at the PHIPA Summit Conference, Toronto, November - PowerPoint PPT Presentation

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Privacy and EHR Programs Dr. Alan F. Westin Professor of Public Law and Government Emeritus, Columbia University Director, Program on Information Technology, Health Records and Privacy at the PHIPA Summit Conference, Toronto, November

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Sponsored by new EHR-Privacy Program of my Center Harris National HARRIS Online survey of 2,638 adults, February. Represents 163 million U.S. adults online; ... – PowerPoint PPT presentation

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Title: Privacy and EHR Programs Dr. Alan F. Westin Professor of Public Law and Government Emeritus, Columbia University Director, Program on Information Technology, Health Records and Privacy at the PHIPA Summit Conference, Toronto, November


1
Privacy and EHR Programs Dr. Alan F. Westin
Professor of Public Law and Government
Emeritus, Columbia University Director, Program
on Information Technology, Health Records and
Privacy at the PHIPA Summit Conference,
Toronto, November 3, 2005

2
Privacy a Central Issue in EHR and Health Data
Network Programs
  • many nations moving toward EHR systems facing
    issues of technology and institutional change
  • privacy a make or break factor in public
    response
  • but how to approach EHR privacy not yet clear
  • I see two activities as crucial
  • A. Sophisticated surveys of public and patients
  • B. Empirical research into how current EHR
  • programs and networks are affecting
    privacy
  • balances
  • my presentation will explore these two
    areas...

3
Past Surveys on Health Privacy - pre EHR
  • U.S. and Canadian publics view health and
    financial information as the most sensitive
  • trust in HC practitioners high, but for data
    security low
  • main worry -- health information going to
    non-health organizations (employers, life
    insurers, marketing)
  • also ambivalent about computer effects
  • how will these attitudes play out in EHR
    programs?
  • and what kinds of surveys can test public and
    patient perceptions well?

4
Three U.S. Surveys in 2005
  • HARRIS Telephone. February. 1,012 respondents.
    Represents national public of 214 million adults.
    Sponsored by new EHR-Privacy Program of my Center
    Harris National
  • HARRIS Online survey of 2,638 adults, February.
    Represents 163 million U.S. adults online
    sponsored by Wall Street Journal. Harris Online
  • MARKLE Foundation. Telephone. September. 800
    adults representative of national population and
    800 registered voters. Markle

5
Low Awareness of EHR Programs
  • Harris National (February) survey described
    current U.S. EHR national program efforts and
    asked Have you read or heard anything about
    this program?
  • Only 29 of the adult public said yes --
    represents 62 million out of 214 million adults.
  • Awareness highest -- as expected -- among
    better-educated, higher-income, and online-using
  • Lowest among low income, least educated,
    non-technology-using groups
  • Probably increased since February -- government
    actions and media coverage -- might be 35 now

6
Online Users See EHR Positives
  • Harris Online documented broad optimism re EHR
  • 62 believe EHR can decrease frequency of
    medical errors significantly
  • 73 believe EHR can reduce healthcare costs
    significantly
  • 76 believe EHR can improve patient care by
    reducing unnecessary tests and procedures
  • But, 67 of online users also believe The use
    of Electronic Medical Records makes it more
    difficult to ensure patients privacy

7
EHR Privacy Concerns Harris National
  • sensitive health data may be leaked...............
    .............. 70
  • increased sharing of personal health data without
    patients knowledge...............................
    ......................... 69
  • may be inadequate data security...................
    ................ 69
  • could increase not decrease medical
    errors............... 65
  • worried about computerization, some patients
    wont give sensitive information to health care
    providers.... 65
  • federal health privacy rules will be reduced, in
    the name of efficiency......................
    ..................................... 62

8
Harris National found Public Divided on
EHR and Privacy
  • when asked whether expected benefits to
    patients and society of an EHR system outweigh
    potential risks to privacy, or whether privacy
    risks outweigh expected benefits, U.S. public
    divided right down the middle
  • 48 say the benefits outweigh risks to privacy
  • 47 say the privacy risks outweigh the expected
    benefit
  • 4 werent sure

9
Empowering Patients Seen as Key...
  • Since most adults now use computers, the new
    patient EHR system could arrange ways for
    consumers to track their own personal information
    in the new system and exercise the privacy rights
    they were promised. How important do you think it
    is that individual consumer tools be incorporated
    in the new patient Electronic Medical Record
    system from the start?
  • More than eight out of ten respondents (82)
    rated such consumer empowerment as important
  • 45 of these considered it Very Important

10
Markle Survey Tested Public Views of
Optimal Program
  • asked respondents to imagine a nationwide
    health information exchangeset up for doctors
    and patients
  • -- all information controlled in secure online
    accounts
  • -- medical information within network shared
    only with patients
  • permission
  • -- patient information not in one central
    database continue to
  • be held by patients doctor or
    health care provider
  • -- but how patient information would be
    collected and used were
  • not explained
  • 72 favored creation of such a network 23
    oppose (the Intense Privacy sector of US
    public)

11
Privacy and Security Features Seen
as Essential (Markle)
  • attributes seen as high to absolute priority
    AND as making respondents more likely to support
    EHR
  • -- controls to confirm identity of users
  • -- patient can review who accessed
  • -- individuals permission for all network
    sharing
  • -- individual can decide which information
    shared
  • -- no penalty if patient didnt
    participate/share
  • -- employers have no access
  • -- health record available via Internet in
    secure account
  • -- independent bodies accountable to the
    public would
  • govern, consumer representatives
    included

12
Other MARKLE Findings...
  • 60 support for creation of secure online
    personal health record service
  • 68 say would use to check for mistakes in
    medical record
  • 68 to check and refill prescriptions
  • 58 to get results over the Internet
  • 57 to conduct secure emails with doctors

13
U.S. Surveys Summary -- 1
  • 1. two-thirds of U.S. public not yet informed
    about national EHR project only elites so far
    (same in Canada?)
  • 2. respondents project strong current health
    privacy concerns onto future IT systems
  • 3. primary fears
  • A. EHR will enhance distribution of personal
    health data into organizations setting consumer
    benefits and opportunities or for government
    licensing or law enforcement uses
  • B. Weak data security will lead to leakage of
    sensitive patient health information

14
U.S. Surveys Summary -- 2
  • 4. half U.S. public feels potential EHR benefits
    DO NOT
  • outweigh privacy risks RATIONAL
    AMBIVALENCE
  • 5. but -- if optimal conditions per Markle could
    be
  • achieved, 72 would support
  • 6. however, rhetoric promising privacy will not
    be
  • enough performance will be critical
  • 7. calls for PRIVACY BY DESIGN programs not only
    to
  • be applied to EHR and network efforts
    but also to
  • be measured and evaluated from the
    start
  • I turn next to how that might be done...

15
Empirical Studies of Unfolding EHR
  • since mid-70s, have been valuable heath-privacy
    technology assessments in U.S. and elsewhere
  • best are case study type -- detailed facts
    and then-and-now comparisons
  • combine analysis of new-technology application
    impacts on care and organizational performance
    with effects on patient privacy expectations
  • produce value judgments about state of
    privacy-disclosure balances in new-technology-base
    d organizational settings -- good and bad
  • often identify needs for new policies/laws

16
Can (and Should) Be Applied to EHR/Network
Programs in U.S. and Canada
  • basic model team of health-care, technology,
    and privacy experts conducts on-site visits to
    representative group of current EHR and network
    programs
  • examples of types of programs
  • -- care-providing organizations, general and
    for special
  • populations
  • -- vertically integrated organizations (health
    plans insurers)
  • -- regional health data systems
  • -- national health operations
  • -- employer health systems
  • -- research institutions

17
Elements of the Assessment
  • five phases of a good technology-privacy study
  • 1. the pre-EHR application operation as baseline
  • 2. the EHR or network program described in detail
  • 3. in-depth surveys of patient, provider, and
    staff experiences and judgments
  • 4. a detailed impacts assessment, against current
    legal standards and guidelines new patient
    expectations and behaviors new norms for an EHR
    world
  • 5. suggestions for new laws, policies, procedures
    for this health care sector

18
Timing Is Right to Start Now
  • U.S. and Canada have important EHR and data
    network programs under way
  • their progress and plans for proceeding
    provide a solid basis for a Canadian national
    survey and an empirical assessment program
  • conducting empirical studies in 2006-2007 will
    provide basis for trend-line analyses as these
    programs deepen and expand across a decade
  • effects of EHR and networks on national health
    care systems and health privacy environments will
    be too important to wait until later to study

19
A Privacy by Design Proposal
  • my Program on Information Technology, Health
    Records, and Privacy has a Report on past
    privacy assessments and how EHR studies can be
    done now
  • Building Privacy by Design In Health Data
    Systems
  • available (free) at our two web sites
  • -- www.privacyexchange.org
  • -- www.pandab.org
  • we welcome comments and reactions...
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