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Introduction to Health Record Banks William A. Yasnoff, MD, PhD, FACMI Harvard University. Cambridge, MA. October 15, 2012
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Introduction to Health Record Banks
William A. Yasnoff, MD, PhD, FACMI Harvard University. Cambridge, MA. October 15, 2012
2
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
3
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
4
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 (%)
Val
ue
of
Info
(%
)
5
“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)
6
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
7
What is a Health Record Bank?
http://www.healthbanking.org/video1.html
8
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)
9
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
…
10
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
11
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]
12
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
13
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)
15
ISSUES
16
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
17
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
18
Completeness of Information
0 10 20 30 40 50 60 70 80 90 1000
10
20
30
40
50
60
70
80
90
100
Completeness Required for Value
Completeness of Information (%)
Val
ue
of
Info
(%
)
ISSUES
19
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
20
4.HRB Implementation Strategy
PATIENT CONTROL
CENTRAL REPOSITORY
Stakeholder Cooperation
ensures
Electronic Patient Data
provides
Benefits1. Clinical: Quality, Costs2. Reminders/Alerts3. Research
produces
pay for
enables
Low Costs
results in
Privacy
protectsreinforce
Financial Incentives
allow
ensure
Key Design
Decisions
Estimated Startup Costs: $5-8 million
21
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
ISS
UE
S
22
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
23
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
24
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
25
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
26
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
27
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
28
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
29
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
30
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
31
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
32
14. Operational Efficiency
Source: Lapsia et al, Int J Med Informatics (in press)
33
Operational Efficiency (cont.)
Source: Lapsia et al, Int J Med Informatics (in press) ISSUES
34
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
35
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
36
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
37
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 patient
ISSUES
38
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
39
20. Existing Efforts are Solving This (10 slides)
40
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
41
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?
42
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
44
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
45
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
47
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]
48
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
49
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
50
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?
NODATA NOT
SENT
Clinician Inquiry
Patient data delivered to
Clinician
YES
optional payment
Clinician’s BankSecure patient
health data files
Health Record Bank Operation
BACKUP SLIDES
52
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
53
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
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