PING A distributed, webbased, personally controlled electronic medical record system

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PINGA distributed, web-based, personally
controlled electronic medicalrecord system

• Kenneth D. Mandl, MD, MPH
• Childrens Hospital Boston
• Harvard Medical School

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Gathering the evidence

• Wouldnt it be nice if the reams of documentation
  produced during the course of medical care could
  be easily used to
• test hypotheses about
• disease pathogenesis
• prevention
• elucidate epidemiology
• measure outcomes and improve quality
• deliver health care
• individual
• population

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Electronic medical record (EMR) the Holy Grail?

• Unified views of patient records
• over time
• across institutions
• A database for
• managing clinical populations
• measuring process and outcomes in health care
• improving patient safety and the quality of
  health care
• public health activity
• surveillance
• outbreak detection

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No--Holy Grail not yet found

• The EMR has
• not been widely enough deployed
• not yielded views of patient information across
  institutions and over time
• nor been successfully leveraged to advance
  evidence-based practice
• This, despite
• optimistic outlook for the EMR for 30 years
• massive investment in EMR dot coms

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• Why has the EMR failed?

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Standards have been slow to emerge
Excellent efforts, such as HL7, have not yet
produced a robust clinical document model, and
many of the standards are still underspecified
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Vendors lock up data in proprietary formats

• Not motivated by Holy Grail
• Capture market share
• Lock in need for maintenance and upgrades

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Hospitals do not share information
x
x

• Proprietary
• Perceived competition
• Patient privacy
• Health Insurance Portability and Accountability
  Act
• No dedicated resources to do so

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The patient has rights to request the record
x
x
May I please have my record?
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The answer is yes but . . .
x
x
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Current state of affairs

• Even when information is electronically
  available,
• in an electronic medical record
• in a pharmacy management database
• in a digital radiology system
• the patient is generally given, at personal
  expense and inconvenience, a hard copy

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What if we gave patients a tool to request their
records electronically?
x
x
PING Server
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And create a personal health record
x
x
Comprehensive record
PING Server
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The collection of these records is the population
health database
x
x
PING Server
PING Records
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Thesis

• A variant of the EMR, the PHR (personal health
  record) solves many of the problems, if
  implemented correctly

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PING

• (Funded by the U.S. National Institutes of
  Health)
• next generation
• international
• ubiquitous
• personally-controlled
• longitudinal
• open source
• personal health record

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The PING acronym

• Personal
• Inter-networked
• Notary and
• Guardian

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Lineage

• Guardian Angel Project (1994)
• Record
• Communication
• Education
• Decision support
• W3EMRS (1995)
• Integration
• HealthConnect (1997)
• Communication
• PING (1997-8)

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BMJ

• The keys to a successful PHR are
• patient control
• interoperability
• open standards
• rules to protect patients

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Why would patients participate?

• PING is a record they
• control
• can document in
• can share with their physicians

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Hippocratic Oath
What I may see or hear in the course of the
treatment or even outside of the treatment in
regard to the life of men, which on no account
one must spread abroad, I will keep to myself,
holding such things shameful to be spoken about.
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The exceptions

• Except that when I submit my bill, I will give
  the entire record to a third party payer.

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Encrypted records stored as XML
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Interoperability

• PING will use whatever standards are currently
  available (HL7 2.3, HL7 3.0)
• Each data source added in will require some
  translation/transposition

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Dealing with the reality of today

• PING allows FAX/E-mail
• Images of the paper record!!
• Not machine readable
• (OCR not ready for prime time)
• Accessible!

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Open source code base

• The source code for PING will be made publicly
  available
• A community of developers can improve it
• A community of developers can build applications
  that run on top of it
• Participation in PING requires that the software
  not be modified to lose interoperability

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Patient role

• Patients can access the record
• Grant access to others
• specific to their role
• of selected portions of the record
• Store their record in a location of their choice
• Annotate in the record (but not delete)

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Physician role

• Physicians can be granted access to the record,
  or portions of it
• Read
• Write
• Once the access is granted, the physician will
  always have access to the the information in the
  record at that time but may be locked out at a
  future time, should the patient choose

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Researcher role

• Institutional Review Board approval
• Patients can consent to studies
• categorically
• individually
• (consent process is built into the interface)
• Researchers can query against the PING records if
  the owner (the patient) has given consent for the
  study
• Allows collection of evidence

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Public health role

• Some diseases must be reported by health care
  institutions, by law to a public health authority
• Will we trigger automatic reporting off of the
  PING record?
• not sure
• but we think not
• However, PING will allow patients to let public
  health access their data with or without
  identifiers

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Bias

• By allowing patients to opt out, even of studies
  that use de-identified data, are we creating bias
  in our research and public health investigations?
• Yes
• Alternative
• Bias at an earlier stagenonparticipation in PING
  because no guarantees of control

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Not a PHR

• Some hospitals in the US have begun to give
  patients views of their electronic medical record
• These are not instances of a PHR
• not controlled by patient
• not cross-institutional

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What if patient does not have Web access?

• Two images of PING/PHR
• An intimate relationship between the patient and
  the record
• decision support
• error checking
• patient annotation
• the Guardian Angel Vision
• A record controlled by, but rarely accessed by
  the patient
• controlled by the patient, used by the doctor

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PING trials

• Strep
• Immunization
• Harvard Cancer Project
• Ping Response

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• ?