Transcript no one manages the patient`s problem list across multiple EMRs

Practical Challenges in Health Information
Exchange
Are Patient-Managed Records the Future?
Presentation to the 37o Congreso Argentino de Pediatria
Joseph H Schneider, MD
Chief Health Information Officer
Indiana University Health
AAP Council of Clinical Information Technology and Child Health Informatics Center
October 1,2015
4/1/2016
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Hola y Gracias
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My First Day in Argentina
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Our Objectives –
What We Will Cover Today
• The interoperability vision
• HIEs, DIRECT and other interoperability attempts
including FHIR
• The raw reality of interoperability problems that
technology alone can’t solve
• Recommendations to help make patients
responsible for their own information and to be
the source of truth
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The Interoperability/HIE Vision
Lower costs & highest quality care through having all your information at
the practitioner’s fingertips !!
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Making the HIE
Vision Work
• Formerly Healtheway, Nationwide Health Information
Network and other names before this
• A "network of networks” model
• Public/private coalition
• Four types of organizations can participate:
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EHRs users
Health information exchanges (HIEs)
Others such as public health, research, quality
Personal health record/consumer apps organizations
• Many accomplishments to date but enormous amounts yet
to do – not clear how successful it will be
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Making the HIE
Vision Work
• Allows “push” communication between trusted
participants, e.g., primary care to specialist
• A special form of secure e-mail
• Challenges:
– no nationwide directory of recipients
– lots of different approaches by organizations (post office
versus direct delivery)
– Much like the EMR inbox problem, the named receiver is
not always the person who should be getting the
message and sometimes is not available
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Making the HIE
Vision Work
• Non-profit vendor association
• Will certify products that support standards/policies
• Initial efforts:
– Patient Linking/Matching so EHRs won’t have to handle
matching of 1 billion+ individual records.
– Patient Access and Consent Management - Foster a
patient-controlled means to simplify consent management
– Record Locator Service and Directed Query - Match
locations of a patient’s previous encounters
– Now interested in FHIR
• Exclusion of Epic is a problem
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Making the HIE Vision Work:
Is One EMR The Answer?
• Unlikely to be one EMR anytime soon
• Epic’s “Care Everywhere” is great for Epic
customers, but Epic isn’t everywhere
– Each installation is unique
– Uses a federated model not available to other EMRs
– Not all Epic sites are in Epic’s HIE
• VA has a single database with >25% of population
but VistA is not gaining market share
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Making the HIE Vision Work:
Is HL-7’s
the Answer?
• FHIR: Fast Healthcare Interoperability Resources
• Goal: Replace CCDA with easy-to-implement internetbased open messaging and documents standards
• Works by exposing discrete data as “services” for retrieval
• E.g., demographics, admissions, diagnostic reports,
allergies, and medications can each be retrieved and
manipulated via their own resource URLs
• Much easier to implement than standard HL7
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The Interoperability Reality:
Increasingly Complex Structures
A major interoperability assumption is that by combining the records of
a patient you get to the truth.
Unfortunately this is not always true
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The Interoperability Reality:
HIEs May Not Be The Answer
Black Book (2015): 94% of America’s providers, health care agencies,
patients and payers [are] meaningfully unconnected
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Where Is the Patient In All This
Technology?
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The Reality:
What Patient Disclosures Should Say
• We will take care of your data but there is a good chance:
–
–
–
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Your data from different doctors may be conflicting
Your data may be too overwhelming for your doctor to use
Your consents may be conflicting or impossible to follow
Your data may be mixed with someone else’s or we won’t be
able to match you with your data
– Your data may be lost or stolen
– Your data may be destroyed sooner than you want
– Your doctor may not participate in an HIE because of liability
concerns
• But trust us anyway and sign here …
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Your Data May Be Conflicting:
The Allergy Conundrum
• Patient tells Boston physician they have an allergy;
recorded in their EMR
• Patient moves to Dallas; new physician conclusively
determines no allergies and records this in their EMR
• Patient is in Denver ED; HIE from Boston and Dallas show
patient is both allergic and non-allergic
• Conflicts can exists for other patient-level data, e.g., name
changes, addresses, gender, even immunizations
• Getting physicians to “fix” their EMRs for “incorrect” info is
not a viable solution, particular in one-time visits
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Your Data May Be Overwhelming:
The Problem List Paradox
• Baby with murmur; hospitalist adds
“undiagnosed murmur” (785.2) in hospital
EMR; data sent to HIE
• Pediatrician adds more specific problem(VSD;
745.4) in office EMR; data sent to HIE
• VSD Repaired: (ICD 35.53) entered by
surgeon in yet another EMR; data sent to HIE
• Quickly there are three entries in the HIE
because no one manages the patient’s
problem list across multiple EMRs
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Your Consents May Be
Conflicting
• Patients can “Opt-In” & “Opt-Out” of two HIEs at the
same time.
– Which prevails?
– How does the physician know data is missing?
• Patients can restrict data by paying cash, but another
physician may release it in a separate encounter if the
patient doesn’t remember to block it each time
• States have different rules for “sensitive data” e.g. in
Texas clinicians have a right to see a patient’s HIV
status whereas in other states they do not
• Adolescent privacy (e.g., birth control) is difficult in an
HIE environment without blocking all data
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Your Data May Be Lost or Stolen
At some point,
patients will start to
say
“Give me my data and
I’ll keep it secure”
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Your Data May Be Discarded
• HIEs often not subject to record retention
laws so data destruction can happen after
2-3 years versus 7-25 years
• Physicians and patients need data years
later
– Physicians need support for court cases
years later …“Here’s what the system showed
me…”
– Patients who need to transfer data must
revert back to the old method of asking their
doctor to send it
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Maybe It’s Time For A New Approach
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Let Patients Manage Their Own Data?
• Let’s build tools and incentives supporting:
– A single repository for all of a patient’s data
– Getting data easily to patients after each encounter
– Allowing patients to manage their own data
including managing inconsistencies, etc.
– Sending appropriate data to the next care site
– Having appropriate data available in emergencies
– Physicians in use of this data as a primary source
• In brief, let’s make give patients the ability to be
responsible for their data and the tools for
physicians to trust patients once again
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Wait – Isn’t NATE Already Doing This?
The National
Association for Trusted
Exchange (NATE)
partners are using
PHRs with DIRECT, but
we need to augment
their work greatly –
Here’s some
recommendations:
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Incentivize Each Person To Have
A Single Portable Data Repository
• Example: Incentivize payers, employers and schools to
provide each individual with a single portable
portal/PHR that they would use to hook to EMRs to
collect and transmit their data and do portal functions
(e.g. schedule appointments)
• Incentivize active use of this tool by the
insured/employee as a condition of insurance or
employer benefits
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Give Patients Their Data Easily
• Example: Put the Blue Button in all EMRs
and teach it to seniors, students, workers…
http://tinyurl.com/bluebuttonvideo
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Give Patients Their Data Easily
•Could one solution be to let
patients play with
?
•This would allow retrieval of
information that they need such
as vaccinations, medication
lists, etc.
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Help Patients Understand their Data
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Help Patients Manage Their Data
• Allow patients to:
– add, modify, delete and prioritize data
– notify medical homes of these changes
– make these changes evident to
physicians
• Provide care coordination support for those
who cannot manage their own Portal/PHR
through insurers, churches, and others
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Support Patients Sending Appropriate
Data to the Next Point of Care
• Incentivize new ways to get PHR info to
physicians (DIRECT from patients or )
• Support professional societies in defining:
– Data needed for visit types
– Metadata to support filtered sending of
data
• Incentivize Portals/PHRs have easy-to-use
ways for patients to choose and send
filtered data that matches professional
requirements and patient privacy needs
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Support Physicians Using Patient Data
• Incentivize EMRs to have “delta” functions
that compare patient-submitted content to the
EMR and provide functions to easily
add/subtract data
• Incentivize medical schools and professional
organizations to teach how PHRs can be a
primary source of information about patients
• Incentivize EMRs to capture a “snapshot” of
the data the patient sent for liability
protections
• Provide standards for tracking all data
sources and changes (“provenance”)
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Real Life: Our Portal/PHR
In North Texas
• Patients have a consolidated PHR for two EMRs
• They can add, delete, and change problems,
medications, allergies and immunizations
• Primary care physicians are notified of these changes
and may elect to make the changes in the primary care
EMR
• Specialists are NOT notified of changes at this time out
of concern of overwhelming them
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Real Life: Our Portal/PHR:
What Have We Learned?
• “Morbid Obesity” is by far the most deleted problem
• Allergies are frequently updated by patients (both
additions and deletions)
• Over 1,000 clinical changes per month are coming in
from patients on a base of 100,000 patient accounts
• We are still investigating how patients react to this, but
early indications are that they are pleased to have
control over their information
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Obvious Questions That I Can Answer
• How can we trust patients not to mess up their data?
• What about my 93 year old grandmother who never
has touched a computer?
• What about someone who doesn’t have a computer?
• What about adolescents?
• How will a person know which allergy is correct?
• Can a doctor see what a patient has changed?
• How will we gather data for research and quality?
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Adios, Gracias y Preguntas
Joseph H Schneider, MD
[email protected]
Indiana University Health
Indianapolis, Indiana
American Academy of Pediatrics
Council on Clinical Information
Technology (COCIT)
Child Health Informatics Center (CHIC)
Elk Grove Village, Illinois