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Title: Identifying Key Principles and Learning from Case Studies Track 4: Technical Aspects Track CoChairs:


1
Identifying Key Principles and Learning from Case
Studies Track 4 Technical AspectsTrack
Co-Chairs Bill Braithwaite, MD, PhDeHealth
Initiative and FoundationWes Rishel, Director,
Gartner, Inc.
  • Accurately Linking Patient Data

THURSDAY, MAY 26 915 am 1030 am
2
Accurately Linking Patient Data
  • HIPAA The Secretary shall adopt standards
    providing for a standard unique health identifier
    for each individual,
  • in 1994, this was an attempt to solve a
    recognized problem.
  • You cant treat a patient based on information
    that may or may not be about that patient.
  • Note it does not specifically require that the
    government assign a unique number to each
    individual.
  • It requires HHS to adopt standards for how each
    individual shall be identified.
  • Could consist of a standard set of demographic
    data elements that, together, serve as unique
    identification, for example.

3
Why Link Patient Data?
  • Making all patient information available will
    help to
  • prevent drug interactions and adverse events,
  • avoid medical errors,
  • help inform decision making for the patient and
    clinician,
  • enable the support of public health efforts,
  • improve research,
  • better physician and organizational performance
    and benchmarking,
  • empower patients and families as active
    participants in their own healthcare.
  • The linking problem is simple to describe but
    hard to solve how does a healthcare professional
    link a patient with their health files, and how
    do they know that any two files stored in
    different places refer to the same person?
  • occurs every time a provider asks to have a
    patient's file pulled or updated, and every time
    a patient moves or changes doctors, visits a new
    lab or specialist, or falls ill while traveling.

4
Access Benefits vs Privacy Risks
  • The ability to locate patient records and deliver
    them securely will enable a number of
    improvements in healthcare, including especially
  • Increasing the ability of authorized clinicians
    to access vital patient records in near real time
    in the event of an emergency.
  • Improving patient access to their own records,
    allowing them to see and correct mistakes.
  • Decreasing the number of tests that need to be
    re-run because the original results can't be
    found on a timely basis.
  • Lowering the risk of negative drug interactions
    because physicians don't know a patient's current
    conditions or medications.
  • The privacy, technical, and policy issues need to
    be addressed to effectively share information
    across multiple organizations.
  • Controls must be applied to limit improved
    electronic discovery and delivery of patient's
    medical records to only when they are needed,
    where they are needed, and to authorized
    individuals who need them.

5
Current Linking
  • Current solutions tend to be ad hoc, paper based,
    local, and ineffective.
  • Every institution in the healthcare system from
    sole practitioners to giant hospital chains faces
    the linking problem.
  • There is no standard solution, and for many sites
    of care, paper records are still the norm.
  • Paper records have the advantages of tangibility,
    making it possible to aggregate individual files
    easily within a single institution, but are hard
    to search and hard to share.

6
Local Data Only
  • The only files on a patient that can be easily
    called up are those held locally.
  • Healthcare personnel must often work with a
    partial subset of the available information on a
    patient in their care.
  • Results in frequent re-running of tests because
    earlier results are unavailable.
  • Creates enormous waste and additional expense.
  • In one case, 15 of expenses were in running
    duplicate tests because the early results were
    unobtainable.
  • At worst, it delays critical diagnosis or exposes
    patients to invasive procedures unnecessarily.

7
Common Framework
  • Thirteen major health and information technology
    organizations collaborated to endorse a "Common
    Framework" in response to 2004 RFI --
  • New health information environment would allow
    appropriate users to find, request, and retrieve
    patient records rapidly and accurately, subject
    to patient authorization.
  • Decentralized approach
  • takes advantage of the significant investment
    already made in information technology in U.S.
    health care,
  • protects the privacy of patient information, and
  • allows rapid progress toward providing Americans
    with more reliable, higher quality care.
  • Accurate patient identification based on uniform
    and standardized methodologies but without a new,
    mandated, national, unique health identifier.
  • Record Locator Services (RLS) created and
    controlled regionally, or within other
    sub-networks, help authorized parties learn where
    authorized and pertinent information is housed -
    but never contain that information.

8
Basic Principles
  • Solution must support the accurate, timely, and
    secure handling and sharing of patient records.
  • It must increase the quality of care, the
    economic sustainability of the healthcare system,
    and preserve the privacy of patient information.
  • It must create value for many different kinds of
    participants, from private, non-profit, and
    government institutions to the individual
    healthcare professionals and patients.

9
Theoretical Identifier Characteristics
  • Unique
  • Only one person has a particular identifier
  • Non-disclosing
  • The identifier discloses no personal information
  • Permanent
  • The identifier will never be re-used
  • Ubiquitous
  • Everyone has an identifier
  • Canonical
  • Each person in the system has only one identifier
  • Invariable
  • A persons identifier wont change over time

10
Master Patient Index (MPI)
  • Healthcare organizations typically maintain an
    MPI as the definitive listing of all of their
    patients.
  • All patient data stored by the organization is
    assigned a patient ID that can be looked up using
    the MPI.
  • Two pieces of information concerning the same
    patient will (ideally) share the same patient ID,
    stored in the MPI.
  • Where information needs to be shared between
    multiple providers, or any other health
    organizations, patient information must be
    matched across multiple MPIs.
  • The same patient will usually be assigned
    different patient IDs in each organizations MPI.
  • The patients identifying information will need
    to be matched so that all the patients
    information can be tied together.

11
Recommendation For Linking Patient Records
  • Design a system for linking authorized patient
    records using existing demographics and
    identifiers, but without foreclosing the ability
    to take advantage of new identifiers should they
    arise.
  • The system should not require the existence of a
    national unique health identifier
  • The system should be designed to create the
    potential advantages of a national unique health
    identifier without requiring top-down issuance
  • The system should use probabilistic algorithmic
    matching of commonly available identifiers to
    link records

12
Accurately Linking Patient Data
  • Speakers
  • Lorraine Fernandes, RHIA, Sr VP of Healthcare
    Practice, Initiate
  • JP Little, Chief Information Officer, RxHub
  • Shaun Grannis, MD, Regenstrief Institute, Inc.
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