The Patient is the Future of Health Information ExchangeHealth Information Exchange

National Healthcare CMO/CMIO SummitAtlanta, GA

Joseph Schneider, MD, MBAChair, Texas Medical Association Council on Practice Management

,March 10, 2015

, gVice President of Clinical Informatics and

Chief Medical Information Officer, North Texas DivisionDallas, TX

Disclosures – I have…

• No financial relationships to disclosep• Not used trademarks for ease of reading• Been working on personal health records (PHRs)• Been working on personal health records (PHRs)

and health information exchange since the late 1990s after 15 years of manufacturing & finance1990s after 15 years of manufacturing & finance

• A great respect for HIT work to date• A great fear we may be chasing the impossible

dream with regards to interoperability

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Our Objectives –Wh t W Will C T dWhat We Will Cover Today

• The interoperability vision• HIEs, DIRECT and other interoperability

i l di FHIRattempts including FHIR• The raw reality of interoperability problems

th t t h l l ’t lthat technology alone can’t solve• Recommendations to help make patients

responsible for their own information and toresponsible for their own information and to be the source of truth

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Our HIT Situation in North Texas

• BSWH Quality Alliance (our ACO) has over 75 different EMRs

• Strategy - bring together in a single warehouse and single private HIE with “data normalization”

• A single patient portal/PHR is a distant vision –patients can have as many portals as they have doctors with EMRs and no consolidated PHR

• DFW has not been fertile ground for community HIEs – multiple attempts have not succeeded

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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 WorkVision Work

• Formerly the Nationwide Health Information Networky f• A "network of networks”• Managed by Healtheway - public/private coalition

F f i i ld i i• Four types of organizations could participate:– EHRs users– Personal health record/consumer apps organizationspp g– Health information exchanges (HIEs)– Others such as public health, research, quality

• Enormous amounts accomplished to date but enormous• Enormous amounts accomplished to date but enormous amounts yet to be accomplished - workgroups supporting this include the Standards and Interoperability Framework

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Making the HIE Vision Work in New YorkWork in New York

• Common statewide policies/standards for interoperability with state-level governance

• Local autonomy to develop HIE services that meet diverse needs and expectations of consumers and providers

• Local leadership and financial commitment to build trust/use

• Good progress in some markets

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Making the HIE Vision Work in TexasWork in Texas

• Fewer statewide policies/standards• 12 public, 3+ private HIEs, with different rules• No geographic monopolies – join any HIEg g p p j y• ~1/3 of Texas is supported only with DIRECT• Some progress despite these limitations in San• Some progress despite these limitations in San

Antonio (single database model) and Houston (federated model)(federated model)

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Making the HIE Vision Work:Privacy Management is ComplexPrivacy Management is Complex

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An HIE AlternativeAlternative

• Allows “push” communication between trusted pparticipants, e.g., primary care to specialist

• Assumes sender gets patient consent• A special form of secure e-mail• Challenges:

ti id di t f i i t– 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 availableg

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Making the HIE Vision Work: CommonWell Health AllianceCommonWell Health Alliance

• 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 aPatient 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• E l i f E i i bl

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• Exclusion of Epic is a problem

Making the HIE Vision Work: Is One EMR The Answer?Is One EMR The Answer?

• Unlikely to be one EMR anytime soony y• Epic’s “Care Everywhere” is great for Epic

customers, but Epic isn’t everywherecustomers, but Epic isn t everywhere– Each installation is unique– Uses a federated model not available to other EMRsUses a federated model not available to other EMRs– Not all Epic sites are in Epic’s HIE

• VA h in l d t b ith >25% f p p l ti n• 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?Is HL-7 s The Answer?

• FHIR: Fast Healthcare Interoperability Resources• Goal: Replace CCDA with easy-to-implement internet-

based 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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Making the HIE Vision Work: Is HL 7’s The Answer?Is HL-7 s The Answer?

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Making the HIE Vision Work: Is HL 7’s The Answer?

• Has a great deal of support

Is HL-7 s The Answer?

• SMArt (Substitutable Medical Applications, reusable technologies) has ONC grant funding to “enable the equivalent of the iTunes App Store for health”

• In 2014 • HITPC and HITSC endorsed more open APIs.• JASON report on "A Robust Health Data

Infrastructure" says FHIR is best candidate API approach and APIs should be part of stage 3 MU

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Making the HIE Vision Work: Is HL 7’s The Answer?

Argonaut Project* - Goals from December 2014 for 2015:

Is HL-7 s The Answer?

FHIR Data Query: FHIR Resources/profiles for query and response of discrete elements of MU C D SCommon Data Set FHIR Document Query: FHIR resource/profile to

bl / f l denable query/response of selected resources, esp. transition of care and patient summary CCDAsSecurity Implementation GuideSecurity Implementation Guide

*athenahealth, Beth Israel Deaconess, Cerner, Epic, Intermountain, Mayo, M di h M K P SMART/B Child ’ Ad i B d

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Meditech, McKesson, Partners, SMART/Boston Children’s, Advisory Board

The Interoperability Reality:Increasingly Complex StructuresIncreasingly Complex Structures

A major interoperability assumption is that by combining the records of a

patient you get to the truth. p y gUnfortunately this is not always true

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Where Is the Patient In All This Technology?Technology?

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The Reality:What Patient Disclosures Should SayWhat Patient Disclosures Should Say

• We will take care of your data but there is a good chance:y g– 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 datay y– Your data may be lost or stolen– Your data may be destroyed sooner than you want

Y d i i i HIE b f li bili– Your doctor may not participate in an HIE because of liability concerns

• But trust us anyway and sign here …y y g21

Your Data May Be Conflicting:The Allergy ConundrumThe Allergy Conundrum

• Patient tells Boston physician they have an allergy; p y y gy;recorded in their EMR

• Patient moves to Dallas; new physician conclusively d i ll i d d hi i h i EMRdetermines 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-allergicshow 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 ParadoxThe Problem List Paradox

• Baby with murmur; hospitalist adds d d hy p

“undiagnosed murmur” (785.2) in hospital EMR; data sent to HIE

• Pediatrician adds more specific Pediatrician adds more specificproblem(VSD; 745.4) in office EMR; data sent to HIE

• VSD Repaired: (ICD 35 53) entered byVSD Repaired: (ICD 35.53) entered by surgeon in yet another EMR; data sent to HIE

• Quickly there are three entries in the 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 Data May Be Overwhelming:The Lab Results FloodThe Lab Results Flood

• Hospital is required to produce CCDA with allHospital is required to produce CCDA with all lab results for Meaningful Use

• Hospital EMR generates CCDA with every labHospital EMR generates CCDA with every lab done during hospital admission

• HIE receives a 90 page CCDA and dutifullyHIE receives a 90 page CCDA and dutifully adds all labs to the repository

• Physician looking to review key discharge labs isPhysician looking to review key discharge labs is overwhelmed with thousands of data points

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Your Consents May Be ConflictingConflicting

• Patients can “Opt-In” & “Opt-Out” of two HIEs at th tithe same time. – Which prevails? – How does the physician know data is missing? p y g

• 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 timethe 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 g pstatus whereas in other states they do not

• Adolescent privacy (e.g., birth control) is difficult in an HIE environment without blocking all dataan HIE environment without blocking all data

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Your Identity May Be MismatchedMay Be Mismatched

• Large organizations use “Master Patient Indexes” g gwhere matching occurs using selected data elements

• Most have multiple mismatches dailyT f i h• Two types of mismatches:– You are inappropriately given someone else’s history– Your history cannot be matchedYour history cannot be matched

• Bad clinical outcomes happen infrequently but will be more common when done on a larger scale

• Biometrics improves this, but is still challenging and not well accepted

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Your Data May Be Lost or Stolen

At some point, p ,patients will start to

say “Give me my data and

I’ll k it ”I’ll keep it secure”

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Your Data May Be DiscardedDiscarded

• HIEs often not subject to record retention laws jso 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 ”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 gsend it

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Your Physician May Fear Sharing DataSharing Data

• Physicians sharing data may be subject to• Physicians sharing data may be subject to HIPAA/other penalties associated with inappropriate release of patient data by pp p p yanyone in the data exchange chain

• No known court cases yet• Could have a chilling effect on physician

data sharingT i i d l f h b• Texas is attempting model safe-harbor legislation

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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 i l i f ll f i ’ d– 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– Allowing patients to manage their own data

including managing inconsistencies, etc.– Sending appropriate data to the next care siteg pp p– 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 againphysicians 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 ( ) pusing PHRs with DIRECT, but we need to augment gtheir work greatly –

Here’s some recommendations:

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Incentivize Each Person To Have A Single Portable Data RepositoryA Single Portable Data Repository

• Example: Incentivize payers employers andExample: Incentivize payers, employers and schools to provide each individual with a singleportable portal/PHR that they would use toportable portal/PHR that they would use to hook to EMRs to collect and transmit their data and do portal functions (e g schedule appts)and do portal functions (e.g. schedule appts)

• Incentivize active use of this tool by the insured/employee as a condition ofinsured/employee as a condition of insurance or employer benefits

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Give Patients/Customers Their Data EasilyTheir Data Easily

• Example: Incentivize the Blue Button or psomething better in all EMRs and teach it to seniors, students, workers…

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Help Patients Manage Their DataManage Their Data

• Allow patients to:p– add, modify, delete and prioritize data

tif th i di l h f th h– notify their medical homes of these changes• Provide care coordination support for those

/who cannot manage their own Portal/PHR through insurers, churches, and others

• Send data from EMRs in patient-friendly terms, not medicalese

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Support Patients Sending Appropriate Data to the Next Point of CareData to the Next Point of Care

• Incentivize new ways to get PHR info to y gphysicians (DIRECT is a crude start)

• Support professional societies in: – Defining data elements for visit types– Define metadata to support filtered sending

f i f tiof information• Incentivize Portals/PHRs have easy-to-use ways

for patients to choose and send filtered data thatfor patients to choose and send filtered data that matches professional requirements and patient privacy needs

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Support Physicians In Use of Patient DataIn Use of Patient Data

• Incentivize EMRs to have “delta” functions that compare patient-submitted content to the EMR and provide functions to easily add/subtract dataI ti i di l h l d f i l• Incentivize medical schools and professional organizations to teach how PHRs can be a primary source of information about patientsp y s c b p s

• 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 TexasIn North Texas

• Patients have a consolidated PHR for two EMRsPatients have a consolidated PHR for two EMRs• They can add, delete, and change problems,

medications, allergies and immunizationsmedications, allergies and immunizations• Primary care physicians are notified of these

changes and may elect to make the changes inchanges and may elect to make the changes in the primary care EMR

• Specialists are NOT notified of changes at thisSpecialists are NOT notified of changes at this time out of concern of overwhelming them

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What Have We Learned?

• “Morbid Obesity” is by far the most deleted problemMorbid Obesity is by far the most deleted problem• Allergies are frequently updated by patients (both

additions and deletions)additions and deletions)• Over 1,000 clinical changes per month are coming in

from patients on a base of 100 000 patient accountsfrom 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 havebut early indications are that they are pleased to have control over their information

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Some Additional Obvious Questions That DO Have AnswersThat DO Have Answers

• How can we trust patients not to mess up their data?How can we trust patients not to mess up their data?• What about my 93 year old grandmother who never

has touched a computer?has touched a computer?• What about someone who doesn’t have a computer?

Wh t b t d l t ?• 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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Was George Bush Right in 2004?

“T t t ti t i“To protect patients, improve care and reduce cost, we need a system where everyone has their own personal electronic medical record that they control andrecord that they control and they can give to a doctor when they need to.”

George W BushGeorge W. BushApril 2004

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Thank You -Questions and DiscussionQuestions and Discussion

drjoes1tx@gmail.com

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