Introduction to Health Record Banks

William A. Yasnoff, MD, PhD, FACMI Harvard University. Cambridge, MA. October 15, 2012

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Where are Patient Records? Medical Knowledge Explosion Provider Response: Specialization & Sub-

specialization Result: Patient Records Scattered

No one has access to comprehensive longitudinal patient records

Records are on paper so can’t be processed, organized, accessed easily

Public health reporting incomplete, delayed

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Health Information Infrastructure Goal: “Comprehensive Electronic

Patient Information When and Where Needed”

Components EHRs – all information electronic Health Information Exchange (HIE)

– mechanism for finding, aggregating, and delivering comprehensive records for each person

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Completeness of Information

0 10 20 30 40 50 60 70 80 90 1000

102030405060708090

100

Value vs. Completeness of Health Informa-tion

Completeness of Information (%)

Valu

e of

Info

(%)

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“Fetch and Show” HIE Approach Improve cooperation by allowing

stakeholders to retain data Eliminate trust problems of central

repository Use Internet to exchange data rapidly &

inexpensively (need standards for interoperability)

Development encouraged with very modest funding from 2004-8

$564 million to states in 2009 (HITECH)

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Analysis of Scattered Model Relates directly to existing process for

obtaining “outside” records at office visits Contact “outside” provider Ask for records (typically sent by fax)

Addresses “if only this could be automated” wish of providers

Does not scale Does not allow searching Example of automating “how we do it

now” vs. using IT to solve the underlying problem

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What is a Health Record Bank?

http://www.healthbanking.org/video1.html

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Analysis of Health Record Banks Advantages

Patient consent– Forces stakeholder cooperation– Ensures privacy (each patient sets

own privacy policy) Central repository

– Searching value-added services Challenges

Disruptive Minimal funding (so far)

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Potential Issues1. Obtaining the Patient Records 11. Historical & Paper Records

2. Ensuring Comprehensive Records 12. Security of Repository

3. Ensuring Patient Participation 13. Need for Standards

4. Implementation Strategy & Cost 14. Operational Efficiency

5. Financial Sustainability 15. Handling Images

6. Patients Withholding Records 16. Handling Mental Health Records

7. Assuring Patient Privacy 17. Master Patient Index for Deposits

8. Why Hasn’t This Been Done? 18. “Out of Town” Patient Visits

9. Has Already Failed (e.g. Google) 19. Use of Data for Research & Policy

10. Public Health Reporting 20. Existing Efforts Are Solving This

…

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HII Business Model Problem How Can HII be Sustained?

Why build if it cannot be sustained? Critical early question for any IT

system Persistent Unsolved Problem

Involves both cost and value Three Business Model Categories (not

mutually exclusive) Taxation Leverage Health Care Savings Leverage New Value Created

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HII Business Model:Option 1 - Taxation

Rationale: HII is public good, all should pay Possible mechanisms

Excise tax on health insurance claims (VT)

Excise tax on hospital charges (MD) Essentially “universalizes” HII component of

healthcare Politically unpopular & difficult

Especially when amount is non-trivial Early $50B/yr estimated cost

$166/person/year [$55/mo for family of 4]

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HII Business Model:Option 2 – Leverage Savings HII expected to reduce health care costs by

3-13% [8% is a good working estimate] 8% x $2.6T = $208 billion/year

Problems Savings not proven Allocation and timing of savings? “Savings” = “Lost Revenue”

Has consistently failed in communities No responsible CFO will pay now for

unproven future savings

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HII Business Model:Option 3 – Leverage New Value Rationale: Stakeholders should be willing to

pay for new value created by HII Examples of new value

Replace paper delivery of lab results (75¢) with electronic delivery [Indianapolis]

Reminders and alerts– “Peace of Mind” – ER notification– Prevention Advisor– Medication refill reminders

Research queries (require searching) Advertising (to consumers)

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Questions?

William A. Yasnoff, MD, PhDwilliam.yasnoff@nhiiadvisors.com703/527-5678

BACKUP SLIDES

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ISSUES

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1. Obtaining the Patient Records Need providers to transmit records on

request Request from “RHIO” or “HIE” may or may

not be honored Request from patient MUST be honored

under HIPAA– If patient requests electronic records

(e.g. via health record bank), they must be provided in electronic form

MU Stage 2 “view, download, and transmit” reinforces patient access to records

ISSUES

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2. Assuring Comprehensive Records

All records must be electronic Need >85% physician adoption

Free EHRs for physicians paid by health record bank Cost is $10/person/year

– 600K physicians needing EHR– 300 million population– 500 people/physician needing EHR– Internet-accessible EHR ≤ $5,000/year $10/person/year

Also incentivizes patient signup

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Completeness of Information

0 10 20 30 40 50 60 70 80 90 1000

102030405060708090

100

Completeness Required for Value

Completeness of Information (%)

Valu

e of

Info

(%)

ISSUES

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3. Ensuring Patient Participation No upfront or ongoing required costs

Optional services for a fee OK Recommendation from trusted source:

physicians Minimal signup effort

Waiting room of physician office With physician recommendation, 90%+

patient compliance anticipated Need to incentivize physicians to sign

up patients (e.g. with free EHR)

ISSUES

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4.HRB Implementation Strategy

PATIENT CONTROL

CENTRAL REPOSITORY

Stakeholder Cooperation

ensures

Electronic Patient Dataprovides

Benefits1. Clinical: Quality, Costs2. Reminders/Alerts3. Research

produces

pay for

enables

Low Costs

results in

Privacyprotects

reinforce

Financial Incentives

allow

ensure

Key Design

Decisions

Estimated Startup Costs: $5-8 million

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Health Record Bank Organization

Customer Support

MarketingOperations

HRB Operator Board of Directors

Management

HRB Corp. (for-profit)

regulate via contract

% of profit

RESPONSIBLE FOR: Policy Governance Oversight

RESPONSIBLE FOR: Obtaining Capital Operating HRB

Executive Director

Other Staff(Optional)

Community Non-profit

Community Board of Directors

Other communitiesuse same HRB

ISSU

ES

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5. Financial Sustainability Costs (with 1,000,000 subscribers)

Operations: $6/person/year EHR incentives: $10/person/year

Revenue Advertising: $5/person/year (option

to opt out for small fee) Optional Reminders & Alerts:

>= $18/person/year– “Peace of mind” alerts– Preventive care reminders– Medication reminders

Queries: ? No need to assume/capture any

health care cost savings (!!) ISSUES

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6. Patients Withholding Records Patients already withhold records

13-17% in surveys Without control, these patients will opt out

If patients don’t control records, who is trusted enough to do it on their behalf?

In HRB, patients will be warned when they choose to suppress information

Physicians are not liable for consequences of withheld information Fully documented in HRB

Potential exceptions to patient control to prevent fraud (e.g., controlled substances)

ISSUES

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7. Assuring Patient Privacy Health record banks NOT covered by HIPAA

But HIPAA allows information release without consent for treatment, payment, operations

Health records banks ARE covered by ECPA – Electronic Communications

Privacy Act (1986)– Consent of subscriber required for any

access by private party Federal Trade Commission enforcement of

online privacy policies– Can shut down sites in violation

ISSUES

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8. Why Hasn’t This Been Done? Technology

Tools now allow rapid deployment Difficult for Existing Stakeholders

Existing healthcare stakeholders are competitors

Will be wary of another stakeholder’s health record bank

Desire to use information for competitive advantage Many healthcare stakeholders do not want

to share information No obvious source of startup funds ISSUES

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9. Has Already Failed (e.g. Google) Google Health Failure

National focus– Didn’t achieve sufficiently comprehensive

information to generate value for any specific consumers

Trust– Privacy policy did not fully protect users– Inherent distrust

Business model– Based on “search”– Not an effective health record bank model

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HRB Examples Washington State Pilots (4)

Inadequate funding insufficient marketing Very small communities cannot achieve

sustainability Harvard U’s MyDataCan (just started)

Trusted by consumers (double encryption) Obtain comprehensive records “App Store” business model Includes personal data beyond health

ISSUES

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10. Public Health Reporting Health Record Banks can provide public

health reporting Immunizations Surveillance

– Lab tests– Diseases– Syndromes

More timely reporting More complete reporting Reporting done “on behalf of” providers

Consent not required (by law)ISSUES

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11. Historical & Paper Records Not normally collected by Health Record

Bank Optional scanning services can be used

– pdf files (“images”) of paper records– ? OCR processing so content available– Cost is a challenge

Over time, most historical records become less important Issue of historical and paper records is a

temporary issue (in general) But there are exceptions, e.g., old EKG

ISSUES

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12. Security of Repository Central repository prerequisite for security

Network security is unsolved problem Need information in one place to assure

protection Less information “exposure” in central

repository Transmitted only once for each use (vs.

twice in distributed model) Massive breach risk independent of

storage Mechanism for retrieval either way Encryption of data at rest reduces risk

ISSUES

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13. Need for Standards All health information infrastructure

requires standards Regardless of architecture

ONC/CMS activities are successfully leading to widespread use of standards

Health Record Banks eliminate an entire class of interoperability With HRBs, only interoperability is

between HRB and provider Otherwise, all systems must be

interoperable with all others (challenging!)ISSUES

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14. Operational Efficiency

Source: Lapsia et al, Int J Med Informatics (in press)

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Operational Efficiency (cont.)

Source: Lapsia et al, Int J Med Informatics (in press) ISSUES

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15. Handling Images Not likely to be stored in Health Record

Bank (at least at first) Very large storage requirements Available from other sources “Pointers” to images are sufficient

Will store imaging reports HRBs may store “small” images

e.g., EKGs

ISSUES

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16. Handling Mental Health Records

Probably better to avoid mental health records at first Very sensitive Public policy issue Leave decision about deposit to patients

Patients can decide what information is available, so can suppress mental health records if they wish

Mental health medications would likely be included

ISSUES

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17. Master Patient Index for Deposits

Deposits with ambiguous identification can be held by health record banks Investigate manually to determine correct

patient Correspondence between provider

identifier and HRB account can then be established

Over time, accurate mapping from provider identifiers to HRB accounts effective MPI

Patient access to records is another opportunity to find and correct errors

ISSUES

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18. “Out of Town” Patient Visits Each patient’s data available in one

place Accessible anywhere via Internet

Route new information to existing record Direct deposit to remote health record

bank (via MU Stage 2 “transmit”) System of forwarding “foreign”

deposits among health record banks (later)

Information deposited by patientISSUES

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19. Use of Data for Research & Policy

Clinical Trial Subjects Ask HRB subscribers if they want to be

notified if they qualify for clinical trials Researchers will pay fees to send messages

to potential subjects Reports from data for research & policy

Ask HRB subscribers if their data can be aggregated into reports for research & policy (with anonymity protected)

Share revenue from fees with users as incentive (“interest bearing” HRB accounts)

ISSUES

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20. Existing Efforts are Solving This (10 slides)

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Health Information Infrastructure Goal: “Comprehensive Electronic Patient

Information When and Where Needed” Components

Electronic Health Records (EHRs) – all information electronic

Health Information Exchange (HIE) – mechanism for finding, aggregating, and delivering comprehensive records for each person

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EHR Adoption

CMS incentive program is very helpful Adoption increasing rapidly But … expected best outcome is 50%

adoption by physicians in 2015 How can adoption by vast majority of

physicians be assured?

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Health Information Exchange(HIE) Mechanism for finding, aggregating, and

delivering comprehensive records for each person

Distributed /Scattered /“Fetch and Show” Model Allow stakeholders to retain data Use Internet to exchange data rapidly &

inexpensively (need standards for interoperability)

Maintain index of record locations in each community

Aggregate each patient’s records when needed

43 Clinical Encounter

Index of where patients have records Temporary Aggregate

Patient History

Patient Authorized

Inquiry

Hospital Record Laboratory Results Specialist Record

Patient data delivered to Physician

LHII

RecordsReturned

Requests for Records

Scattered Model

Clinician EHRSystem

Encounter Data Stored

in EHR

Pointer to Encounter

Data Added to Index

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Index of where patients have records Temporary Aggregate

Patient History

Authorized Inquiry

from LHII

Hospital Record Laboratory Results Specialist Record

Patient data delivered to other LHII

LHII

RecordsReturned

Requests for Records

U.S.

anotherLHII

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Analysis of Distributed Model Relates directly to existing process for

obtaining “outside” records at office visits Contact “outside” provider Ask for records (typically sent by fax)

Addresses “if only this could be automated” wish of providers

Does not scale Does not allow searching Example of automating “how we do it

now” vs. using IT to solve the underlying problem

46

PCAST Report (12/2010) “HIEs have drawbacks that make them ill-

suited as the basis for a national health information architecture.” Significant administrative burdens Lack of financial sustainability Lack of interoperability Architecture does not allow effective

scaling

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HIE Survey (Ann Int Med 154,10:666-71, 2011)

179 HIEs Surveyed Only 13 met Meaningful Use Stage 1

Covering 3% of hospitals, 0.9% of docs Just 6 of these 13 financially sustainable

None of the 179 HIEs met criteria for “comprehensive system”

“These findings call into question whether RHIOs in their current form can be self-sustaining and effective in helping U.S. physicians and hospitals engage in robust HIE to improve the quality and efficiency of care.” [abstract]

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Consumer-Mediated HIE: Health Record Bank (HRB) Secure community-based repository

of complete health records Access to records completely

controlled by patients (or designee) “Electronic safe deposit boxes” Information about care deposited

once when created Required by HIPAA

Allows EHR incentives to physicians to make outpatient records electronic

Operation simple and inexpensive

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HRB Solves HII Problems Privacy

Patient control each person sets their own privacy policy

Stakeholder Cooperation Patients request data all stakeholders

must provide it (by law) HRB profit allocations to data partners

Making Information Electronic Business model provides free EHRs for

physicians Financial Sustainability

New compelling value for patients ~$23+/person/year recurring revenue

ISSUES

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BACKUP SLIDES

Health Record Bank Operation

Health Record Bank Rationale

Where are Patient Records?

PCAST Report Recommendations

Questions?

ISSUES

51 Clinical Encounter

Health Record Bank

Clinician EHRSystem

Encounter Data Entered in EHR

Encounter Data sent to

Health Record Bank

PatientPermission?

NO DATA NOTSENT

Clinician Inquiry

Patient data delivered to

Clinician

YES

optional payment

Clinician’s BankSecure patient

health data files

Health Record Bank Operation

BACKUP SLIDES

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HRB Rationale Operationally simple

Records immediately available Deposit new records when created Enables value-added services Enables research queries

Patient control Trust & privacy Stakeholder cooperation (HIPAA)

Low cost facilitates business model Can create EHR incentive options

Pay for deposits Provide Internet-accessible EHRs

BACKUP SLIDES

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Where are Patient Records? Medical Knowledge Explosion Provider Response: Specialization & Sub-

specialization Result: Patient Records Scattered

No one has access to comprehensive longitudinal patient records

Records are on paper so can’t be processed, organized, accessed easily

Clinical and policy decisions based on incomplete data

BACKUP SLIDES

54

PCAST Recommendations (12/10) Recommendation 1: Distributed System of

Record Elements Tagged with XML Metadata Protected by “digital rights management” Held in multiple repositories BUT … DRM failed for music & movies

(with only one data type and one access option)

Recommendation 2: Create “Universal Exchange Language” for Interoperability $20-40 million over a few months BUT … Problem has been unsolved for

decades BACKUP SLIDES