Facilitating and Chronicling Data Use for Better Health and Health Care
Transcript of Facilitating and Chronicling Data Use for Better Health and Health Care
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Patients, the Public, and EHRs
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Edward H. Shortliffe, MD, PhD
President and CEO
American Medical Informatics Association
Bethesda, MD
Facilitating and Chronicling Data Use for
Better Health and Health Care
Session 4: Weaving a Strong Trust Fabric
IOM-ONC Workshop on a Learning Healthcare System
Washington, DC
July 27, 2010
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The Fabric of Trust
Learning healthcare system ultimately depends on
the quality, completeness, and availability of data
that emerge from the clinical encounter
Data acquisition and submission will depend not
only on buy-in from providers but patientscommitments to EHR use and resulting electronic
data management
The public have concerns about their privacy, the
confidentiality of their data, and the security of datathat are managed by the healthcare system
Patient support for EHRs depends on their sense
that their care is improved or their life is simplified
when their provider uses the technology
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A Personal Anecdote
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Resolution
Made EHR use, and office automation, aprerequisite for choosing a new physician
Found excellent care available with thisrequirement satisfied
Routine use of Internet for bookingappointments, requesting refills, checking labresults, reviewing records
Reasonable faith in the authentication and
authorization procedures required On balance, risk of data breaches is
countered by convenience and sense of trustin physician and system (competence andquality)
But how typical am I?
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183 PAGES (2nd edition 2010)
Brookings Institution Press
Investigates the factors limiting the
ability of digital technology to remake
health care in the United States and
around the world.
What political, social, and ethicalchallenges are presented by online
health care?
How are racial, ethnic, and other
disparities limiting the e-health
revolution?
How accessible are health-relatedInternet websites to the disabled,
those at basic or below basic levels
of literacy, or with limited English
proficiency?
Are there differences between
websites sponsored by public,
private and nonprofit organizations
that limit technology utilization?
How can we close the disparity gap
and deal with conflicts of interest
that contribute to distrust in the
information presented?
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Observations
Convenience, quality, and perceivedvalue will trump concerns aboutprivacy or other risks IF there is a
climate of trust Financial system has helped to
demonstrate this to us:
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Is that the banks card
reader, or has someoneinstalled a reader over the
banks?
There is a camera taking
your photo as you use the
ATM. How might that photo
be used to compromise your
privacy?
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Issues to Consider
The publics knowledge of EHRs is limited and
somewhat one-sided
Need to acknowledge the role that the media have played
in this regard
Opportunities for others to provide a balancedperspective, acknowledge the risks but also the significant
advantages
A sense of value for self or family will tend to
dominate the individuals perspective
The greater good (for public health, research or society)
must be viewed as secondary
Individuals today tend to trust their own
physicians, and their hospitals, but not insurers or
the profession more generally
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Moving Forward
Challenges in making the intellectual case
based on quality
e.g., recently documented resistance by
public to the notion of evidence-basedmedicine
Tremendous appeal when EHR is viewed as
convenient for patients, empowering, and a
way of dealing with the opacity of traditional
healthcare interactions
Consent for data use will follow if there is a
strong trust in the data stewardship that
occurs when EHR data are shared,
anonymized, pooled, and reused
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Thank You!
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Patients, the Public, and EHRs