Privacy and Security Tiger

Team Meeting
Discussion Materials
Today’s Topic: Patient Matching Hearing

December 10, 2010

Agenda

Time Topic
10:00 a.m. Call to Order
• Judy Sparrow, ONC
10:05 a.m. Introduction and Overview of Agenda
• Deven McGraw, Co-Chair
• Paul Egerman, Co-Chair

10:15 a.m. Framing the Discussion: Patient Matching

• Objective and Scope
• Background Information
• Key Themes from Testimony

11:45 a.m. Public Comments

12:00 p.m. Adjourn

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Objective and Scope of this Discussion

• Provide policy recommendations on privacy and security

issues associated with linking or matching patients to their
information within healthcare entities in order to support
information exchange across healthcare entities.

• Information exchange between different healthcare entities

depends on an ability to match patient identities without
benefit of common identifiers. Issues include:
– Correctly linking patients to their health data is a vital step in
quality health care;
– Accuracy, integrity and quality of the patient data are also critically
important; and
– Internal data issues must be resolved before tackling the larger
issues involved in exchange.

Applicable Law: Other

• HIPAA Privacy Rule – Minimum Necessary Standard

– Requires evaluation of practices and safeguards to limit
unnecessary or inappropriate access to and disclosure of PHI

• HIPAA Privacy and Security Rules

– Include a generic provision of assuring the right data is
associated with the right person

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Proposed Questions for the Tiger Team

1. What level of accuracy should be established for

patient matching (i.e., matching patients to their
data)?
2. What standards, if any, might need to be
established to assist with patient matching?
3. Are there best practices that should be
recommended to assist with patient matching?

The focus of today’s Tiger Team meeting will be

on common themes that emerged through the
hearing that may influence our answers to
these questions.
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Why is Patient Linking Important?

• Improved outcomes in clinical care

• Patient safety concerns
• Impact on efficiency of operations
• Reduction of fraud

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Challenges in Patient Linking

• Patient linking is not a simple activity, and includes:

– Technology
– Human processes
– Workflows
• Different geographic settings pose different challenges
• Poor data quality significantly inhibits the ability to accurately
match patients to their data
• A variety of algorithms are used to predict a likely match
– These algorithms vary in their design
– No formal testing or acceptance process
• Increased margin of error the further removed from the original
source of data
• Data linking challenges in HIEs may be magnified due to
complexities with multiple data sources
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Definitions: Accuracy, False Positives and Negatives

• Accuracy = number of patients correctly identified / total number of

patients

The records in reality belong to:

Different Clinical
Same person
people information
Different False not linked,
Correct result patient has
Result from people negative
duplicate
matching
Same person False Positive Correct result records

Clinical Most systems are

information designed around the false-
assigned to the positive (erroneously
wrong patient linking records) rate
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Accuracy Standards

• Required levels of matching accuracy varies based on

the situation
– Different care settings or data uses require different patient
linking performance characteristics
– Not possible to set one target that will apply to every situation
• Organizations should measure their matching accuracy
as part of an internal improvement/learning process
• Who should be responsible for measuring errors?
– Owners of the data - Viewed as an organizational
responsibility and a necessary commitment to health
information exchange
– Entity in the middle (HIE) may play a role

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Where Standards Might be Helpful

• Potential areas where standards might be helpful:

– Establishing consistent data fields and formats for
minimum set of patient demographics
• Name, DOB, zip, address, and gender are 5 common fields
• For example, establishing common formats for NAME (e.g.,
require use of middle name will significantly improve
Strength of Theme

matching)
• Accuracy and verification of address
– Requirements to use standards for data fields and formats

– Matching algorithms

– Matching accuracy

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 Best Practices
• Conduct evaluations of the effectiveness of algorithms
– encourage documentation, testing, and transparency
– Common test data sets
• Solicit best practices on how organizations ensure that they have “good
data” for patient matching
– Types and attributes (structured data elements) of authoritative sources
– How trust is assured in authoritative sources
– Supplemental sources that can be used to support linking
• Recommend that organizations measure and track accuracy for
performance improvement
• Recommend transparency in algorithms
• Create a learning system/community of interest to facilitate best practices
and build on learnings and experience
• Enhance matching capabilities using biometrics or knowledge attributes
(potential research opportunity?)

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Role of ONC

• Broaden the discussion to cover data quality

– Define and understand the ecosystem and patient linkage opportunities
– Shift emphasis to data quality
• Support conversation about development of standards for minimum
data set
• Promote transparency and consumer education/communication
– Process for sharing how patient matching is conducted, accuracy of the
matching, and challenges in health information exchange
– Transparency to the consumer so that inaccuracies can be identified and
remedied
– Develop a testing process for patient linking algorithms
– Matching systems will never be perfect
• Develop accountability mechanisms
– Disclosure requirements for mismatched records
– Address Exchange Liability Concerns
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Other Thoughts…

• Change context from patient identity linking to

consumer identity linkage
– Expands context from solely patient care to a broader view of
health care management
• User-centric identity raises concerns based on
variability experienced in other domains
• While mentioned, universal patient identifiers, including
voluntary identifiers, were not consistently described as
an important part of the matching process.

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