11 laying the foundation for transforming u.s. healthcare david lansky, ph.d. markle foundation may...
TRANSCRIPT
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Laying the foundation for transforming U.S. healthcare
David Lansky, Ph.D.Markle Foundation
May 3, 2005
The Challenge
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More than 57,000 Americans die needlessly each year because they do not receive appropriate care
U.S. Adults Receive Barely Half of Recommended Care
U.S. healthcare spending higher,
but quality lower, compared with
other industrialized countries
One-third of the $1.6 trillion spent on healthcare each year is wasted on duplicative or ineffective care
- (IOM) - (NCQA)
- (McGlynn et al)
- (CECS atDartmouth)
Preventable Errors in Hospitals
Kill 44,000 to 98,000 People
Each Year
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IOM’s Six “Aims” for U.S. Health Care
Safe—avoiding injuries to patients from the care that is intended to help them.
Effective—providing services based on scientific knowledge to all who could benefit and refraining from providing services to those not likely to benefit (avoiding underuse and overuse, respectively).
Patient-centered—providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.
Timely—reducing waits and sometimes harmful delays for both those who receive and those who give care.
Efficient—avoiding waste, including waste of equipment, supplies, ideas, and energy.
Equitable—providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location, and socioeconomic status.
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IOM’s Ten “Design Rules” for U.S. Health Care
1. Care based on continuous healing relationships.
2. Customization based on patient needs and values.
3. The patient as the source of control.
4. Shared knowledge and the free flow of information.
5. Evidence-based decision making.
6. Safety as a system property.
7. The need for transparency.
8. Anticipation of needs.
9. Continuous decrease in waste.
10. Cooperation among clinicians.
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The “Design Rules” that depend on patients
1. Care based on continuous healing relationships.
2. Customization based on patient needs and values.
3. The patient as the source of control.
4. Shared knowledge and the free flow of information.
5. Evidence-based decision making.
6. Safety as a system property.
7. The need for transparency.
8. Anticipation of needs.
9. Continuous decrease in waste.
10. Cooperation among clinicians.
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“To protect patients and improve care and reduce cost, we need a system where everyone has their own personal electronic medical record that they control and they can give a doctor when they need to.”- President Bush
At American Association of Community Colleges Annual Convention April 26, 2004
“We should adopt the model of a ‘personal health record’ controlled by the patient, who could use it not only to access the latest reliable health information on the Internet but also to record weight and blood sugar and to receive daily reminders to take asthma or cholesterol medication.”- Senator Hillary Clinton
NY Times, April 18, 2004
The politicians’ perspective
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Stages of health care transformation?
1. Adoption of electronic health records
2. Interoperability of electronic health records
3. Proliferation of personal health records
4. Shift of control to patients and families
5. Redistribution of technology to the patient and family
6. Reallocation of roles, responsibilities and … money?
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Extent of Clinical IT Adoption – CDC estimates
Hospital Emergency Depts. 31%
Hospital Outpatient Depts. 27%
Physician offices 17%
Physician CPOE 8%
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What will it take to increase adoption?
Financial incentives to end-users (“business case”) CMS Pay for performance/pay for use Adjustments to Stark
Confidence in product stability, interoperability
Cultural changes: MD, public
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The interoperability assumptions
A future of better, more efficient care can beaccomplished through “dynamic connectivity”that allows information to move: Where it’s needed
When it’s needed
In a private and secure manner
Achieving this goal will require public and privatesector collaboration
A ‘roadmap’ is needed to chart the course
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• Broad-based, public-private coalition • More than 100 collaborators
— Providers (AMA, ACP, AAFP, ACEP, Presbyterian, Partners)
— Patients (IAM, NCCS)— Suppliers (RxHub, Surescripts, J&J, Pfizer)— Payers (CAQH, AHIP, BCBSA, GE, Leapfrog, PBGH)— Accreditors (NCQA, JCAHO, URAC)— Government agencies (CMS, AHRQ, CDC, FDA, VA)— Researchers (AHRQ, CDC, AMIA)— IT vendors (Siemens, CSC, IBM, Microsoft, Allscripts)
• Founded and supported by Markle Foundation,with additional support from Robert WoodJohnson Foundation
• See www.connectingforhealth.org
What is Connecting for Health?
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Catalyze changes on a national basis to createan interconnected, electronic health information infrastructure to support better health & healthcare
Purpose of Connecting for Health
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Decentralized
Federated: network of networks
No national “Health ID”
Bottom up and top down
Incremental: all levels of sophistication
Scalable and evolvable
No 'rip and replace’
Patient control
The Connecting for Health Approach
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Six Elements for a National Health Information Environment
1. An environment – not a network
2. A common framework
3. Standards and Policies Entity
4. Record Locator Service
5. Patient control
6. Financing and incentives
GET
Source: © 2004 The Markle Foundation Graphic adapted from Tom Benthin original.
MessageTransferMessageTransfer
FIND
Patient IndexPatient Index
Provider asks if there are records for his/her patient
Index sendslocation of
any records
Sourcesends indexinformation
LOCATOR
Provider asksfor and receives
records
Recordsare sent to Provider
The Markle FoundationConnecting for Health
Proposed architecture is federated and decentralized:Once records are located, the health information flowsPeer-to-Peer (with patient’s authorization)
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DataSources
DataSources
Patients
Providers
Hospitals
DiagnosticServices
Payors
Public HealthProviders
IndividualCare
Providers
IndividualCare
Providers
Patients
Providers
Hospitals
DiagnosticServices
Payors
Public HealthProviders
GET
SEND
Source: © 2004 The Markle Foundation Graphic adapted from Tom Benthin original.
De-IdentifiedData
De-IdentifiedData
ReportingRouter
ReportingRouter
MessageTransferMessageTransfer
FIND
Patient IndexPatient Index
Provider asks if there are records for his/her patient
Index sendslocation of
any records
Sourcesends indexinformation
LOCATOR
Provider asksfor and receives
records
Recordsare sent to Provider
TING
Source may push data for
reporting
Connecting for HealthThe Markle Foundation
REPOR
The architecture supports point of care information sharingand population-based reporting
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DataSources
DataSources
Patients
Providers
Hospitals
DiagnosticServices
Payors
Public HealthProviders
DATA
IndividualCare
Providers
IndividualCare
Providers
Patients
Providers
Hospitals
DiagnosticServices
Payors
Public HealthProviders
PublicHealthPublicHealth
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Element #1 – an environment, not a network
U.S. can create an environment with specific characteristics, so that any appropriate and authorized entity can participate in information sharing – a doctor, an individual, a pharmacy, a hospital, a public health agency
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Element #2 – a Common Framework
This environment will be enabled by general adoption of a set of specific, critical tools, including technical standards for exchanging clinical information, explicit policies for how information is handled, and uniform methods for linking information accurately and securely.
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The Proposed Stack of Standards
(Local application logic)
Health-care specific message contents
Envelope with delivery instructions
"On the wire" encryption
Transport and low-level application logic
Logical network
(Physical network)
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Needed Security Policies
Technical
Physical
Mirroring
Incomplete data/liability
Enforcement policy
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Policy Resources in Development
Backgrounder on core privacy and security principles
General guidance document—includes minimum necessary participation in governance and structure, key stakeholder requirements, and general approaches
Community sharing “rules of the road” document
Model patient consent language
Model Data Use and Access language for creating a multilateral agreement at the regional/ community level
Model Privacy Practices
Identification of areas where state-specific accommodations needed
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Element #3 – a Standards and Policies Entity
This toolkit must be uniform, so must be defined by a single, national entity – the Standards and Policies Entity – which reflects public and private sector participation, is transparent, accountable, and operates in the public interest.
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Designing a Standards and Policy Entity
Charter
Participation
Authority
Leadership
Financing
Accountability
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What will it take to promote interoperability?
Financial incentives to end-users (“business case”)
Value in “knowing” rather than non-knowing
CMS
Pay for performance/pay for use
Public demand and public trust
Universally accepted standards, policies, and methods (SPE)
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Giving individuals access to and control over their personal health information enables: Patients better able to maintain health and manage their
care
More reliable care; e.g., in emergency situations
Greater efficiency, less duplication of tests and quicker access
Improved satisfaction, lower cost and greater choice
Improved health care quality and safety
More effective communication and collaboration between patients, doctors, pharmacies, and others
Potential of personal health records
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Presenter:In managing her diabetes, the patient uploads her blood glucose monitoring data to her Personal Health Record. An automated alert makes the patient aware of low blood sugar levels.
Presenter:In managing her diabetes, the patient uploads her blood glucose monitoring data to her Personal Health Record. An automated alert makes the patient aware of low blood sugar levels.
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Presenter:The patient is also encouraged to make sure that her medication list is complete and accurate. She notes that she is now also taking aspirin.
Presenter:The patient is also encouraged to make sure that her medication list is complete and accurate. She notes that she is now also taking aspirin.
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Presenter:An automated alert notifies her that this may contribute to her low blood sugars.
Presenter:An automated alert notifies her that this may contribute to her low blood sugars.
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Presenter:The patient sends a secure message to her physician, copying in her blood glucose graph, and asking if maybe she should consider stopping the aspirin.
Presenter:The patient sends a secure message to her physician, copying in her blood glucose graph, and asking if maybe she should consider stopping the aspirin.
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Presenter:Her doctor replies that she should continue taking the aspirin, but should cut her dosage of Glyburide in half. He also recommends that she have her Hemoglobin a1c re-checked. Patient education materials are attached for the patient’s convenience.
Presenter:Her doctor replies that she should continue taking the aspirin, but should cut her dosage of Glyburide in half. He also recommends that she have her Hemoglobin a1c re-checked. Patient education materials are attached for the patient’s convenience.
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Presenter:The patient’s laboratory results are sent from the doctor to become a part of the patient’s PHR. Because the patient is found to high cholesterol, her PHR can help educate the patient about cholesterol management even before her next office visit.
Presenter:The patient’s laboratory results are sent from the doctor to become a part of the patient’s PHR. Because the patient is found to high cholesterol, her PHR can help educate the patient about cholesterol management even before her next office visit.
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No good answer today
Some of its attributes:
Person controls own PHR
Contains information from entire lifetime
Contains information from all providers and self
Accessible from any place, at any time
Private and secure
Transparent – strong audit trail
Interactive across one’s health care network
What is a personal health record?
Retrieving your health information
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Primary Care Doctor
Specialist Doctor
Hospital XPharmacy Q Pharmacy R
School Nurse
Hospital Y
Payer Data Center (health plan, Medicare)
Laboratory
Home Monitoring
Device
The Person as an Information Hub
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Personal Health Record
Primary Care Doctor
Specialist Doctor
Hospital XPharmacy Q
Pharmacy Data Hub
Pharmacy R
School Nurse
Hospital Y
Hospital System
Data Hub
Payer Data Center (health plan, Medicare)
Laboratory
Home Monitoring
Device
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Degree of interest in PHR
High reported desire for specific functions:
Email your doctor – 75%
See test results – 63%
Look for mistakes in my record – 69%
Principal interest by caregivers, frequent health system users (chronic illness, elderly), computer savvy
Primarily offered as portal by large delivery systems
Loyalty marketing
Offering only a ‘view’ of EMR
“Untethered” PHRs not proving viable
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Current interest in PHR tools
Thirty five percent of respondents would use seven or more features of a PHR today if it were available.
Almost all respondents (91 percent) are very concerned about their privacy and keeping their health information secure. However, most people believe that technology provides appropriate protections.
People who suffer from chronic illness and/or are frequent health care users are less concerned about privacy and security. For example, 41% of the healthy would not want to receive lab results online due to privacy concerns, compared with 36% of those with chronic conditions.
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And then what . . . ?
In 2015: Widespread health IT adoption
Interoperability
Personal health records
And … “Smart homes”
Genetic testing
Personalized medicines
Consumer managed financing
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Implications for research organizations
Opportunities for real-time data collection from patients and from providers?
Implications of “patient control” over data access?
How to control variables in research design in real-time environment?
Economics of research across distributed data collection network – who pays when infrastructure pre-exists?
And many more….?