facilitating and chronicling data use for better health and health care

8/9/2019 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!

[email protected]


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Patients, the Public, and EHRs

facilitating and chronicling data use for better health and health care

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