11 laying the foundation for transforming u.s. healthcare david lansky, ph.d. markle foundation may...

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1 1 Laying the foundation for transforming U.S. healthcare David Lansky, Ph.D. Markle Foundation May 3, 2005

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11

Laying the foundation for transforming U.S. healthcare

David Lansky, Ph.D.Markle Foundation

May 3, 2005

The Challenge

2

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

3

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.

4

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.

5

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.

6

“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?

8

Extent of Clinical IT Adoption – CDC estimates

Hospital Emergency Depts. 31%

Hospital Outpatient Depts. 27%

Physician offices 17%

Physician CPOE 8%

9

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

10

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)

15

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

17

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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21

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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

24

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.

25

Designing a Standards and Policy Entity

Charter

Participation

Authority

Leadership

Financing

Accountability

26

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)

27

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….?

4343

David Lansky, Ph.D.Markle [email protected]

www.connectingforhealth.org