Forum V:Forum V:The Informed The Informed Patient & Citizen …Patient & Citizen … A U.S. PerspectiveA U.S. Perspective

David Lansky, Ph.D.Foundation for Accountability27 September 2001

Current Quality Current Quality Issues in USIssues in US

• ““Underuse, overuse, misuse”Underuse, overuse, misuse”

• Variable, unpredictable performanceVariable, unpredictable performance

• Poor compliance with best practicesPoor compliance with best practices

• Poor chronic disease carePoor chronic disease care

• Medical errorMedical error

• Severely inequitable accessSeverely inequitable access

• Uncontrolled costs, uncertain valueUncontrolled costs, uncertain value

• Many failed professional and purchaser Many failed professional and purchaser improvement efforts, 1985-2000improvement efforts, 1985-2000

Consumers and Consumers and Health Policy in the Health Policy in the USUS

• No central health policy mechanismNo central health policy mechanism– Some government-provided careSome government-provided care

– Some government-financed careSome government-financed care

– Most care delivered in private sector Most care delivered in private sector with private NGO oversightwith private NGO oversight

• Various failed efforts since 1930s to Various failed efforts since 1930s to involve consumersinvolve consumers

Reasons for failure ...Reasons for failure ... Unequal information and expertise by Unequal information and expertise by

consumers vs. professionalsconsumers vs. professionals Consumers lack concentrated Consumers lack concentrated

mechanisms of influencemechanisms of influence Institutions and professions have Institutions and professions have

business interests and resourcesbusiness interests and resources Policy leaders unclear about appropriate Policy leaders unclear about appropriate

role for including consumersrole for including consumers Lack of time and payment for consumer Lack of time and payment for consumer

involvementinvolvement

Recent shift to Recent shift to “consumer-driven” “consumer-driven” health carehealth care

• Nothing else has workedNothing else has worked• Rapid shifts in information accessibilityRapid shifts in information accessibility• Societal shift to democratic, less paternalistic Societal shift to democratic, less paternalistic

modelsmodels• Anti-managed care backlashAnti-managed care backlash• Increased importance of chronic care and self-Increased importance of chronic care and self-

carecare• Employer interest in smaller role - defined Employer interest in smaller role - defined

contribution benefit planscontribution benefit plans• Ideological, political shift to consumer choice Ideological, political shift to consumer choice

modelsmodels

Goals for ‘Activated’ Goals for ‘Activated’ ConsumersConsumers

• Understand the importance of qualityUnderstand the importance of quality• Able to choose most appropriate doctors, Able to choose most appropriate doctors,

services, insurersservices, insurers• Better informed expectations of visit and Better informed expectations of visit and

systemsystem• Informed dialogue between patient, family Informed dialogue between patient, family

and providerand provider• Demand policy changes that improve Demand policy changes that improve

quality, reward excellencequality, reward excellence

What information do What information do consumers want?consumers want?What information do What information do consumers want?consumers want?

• Help making choices:Help making choices: – ““Good doctors are everywhere, bad doctors are everywhere; I need to find what’s right Good doctors are everywhere, bad doctors are everywhere; I need to find what’s right

for me.”for me.”– ““I think that results would really make a difference in helping select and then would also I think that results would really make a difference in helping select and then would also

give the providers a message that folks are looking at their outcomes.”give the providers a message that folks are looking at their outcomes.”

• Experience of care:Experience of care: – ““The doctor listens to me, answers my questions, and gives me information about what The doctor listens to me, answers my questions, and gives me information about what

he thinks is going on and what he proposes. Also asks if I have further questions or he thinks is going on and what he proposes. Also asks if I have further questions or concerns.”concerns.”

• Guidelines:Guidelines: – ““I’d still want to know why isn’t that physician following it? If I had asthma and was I’d still want to know why isn’t that physician following it? If I had asthma and was

considering going to this person, the questions I would ask to that physician are: ‘Why considering going to this person, the questions I would ask to that physician are: ‘Why aren’t you following the best practices, and tell me why what you’re doing is aren’t you following the best practices, and tell me why what you’re doing is acceptable’.”acceptable’.”

• Factors influencing care:Factors influencing care:– ““I don’t know how true it is, but there’s supposed to be something charged against the I don’t know how true it is, but there’s supposed to be something charged against the

doctor’s account if he sends you to a specialist.”doctor’s account if he sends you to a specialist.”

A consumer ‘activation’ A consumer ‘activation’ strategy:strategy:A consumer ‘activation’ A consumer ‘activation’ strategy:strategy:

Labor union

Employer

State government

Health insurer

Patient organization

Policy attitudes and expectations

Interaction with providers

Healthy behavior and self-care

CONSUMERS

UNIFORM LANGUAGE AND TOOLS CHANGED PUBLIC CLIMATE

Example: Example: General General Electric Co.Electric Co.

Consumer Info on Best Practice Care

Better Self-care for Chronic Conditions

Choice of Best Treatment Option for

Acute Condition

Rating of Physicians by Consumers (comparing

care given to BP)

Consumer Info on Best Practice Providers

Consumer Selection of Best Practice Providers

Leapfrog Safety Standards

Other Quality Criteria (NCQA, JCAHO)

Other Consumer Evaluation (Satisfaction, Subjective comments)

Consumer Selection of Best Health Plans (AHPs)Trigger for

evaluating Hospitals

Trigger for evaluating Physicians

Building Building Accountability Accountability through Consumer through Consumer ActivationActivation

Measure quality

Educate: awareness campaigns

Disclose and inform

Decision Support

Requirements for Requirements for consumer use of consumer use of measuresmeasures

• Addresses consumers’ ideas Addresses consumers’ ideas about “quality”about “quality”

• Easy to understandEasy to understand

• Covers a wide variety of servicesCovers a wide variety of services

• Focuses on benefits to consumer Focuses on benefits to consumer and patient, rather than specific and patient, rather than specific technologies and systemstechnologies and systems

Recommended Recommended HIV/AIDS HIV/AIDS Quality MeasuresQuality MeasuresExperience of CareExperience of Care

• Access to social and Access to social and mental health services mental health services

• Access to health care Access to health care and medical services and medical services

• Involvement in care and Involvement in care and treatment decisionstreatment decisions

• Self-management Self-management educationeducation

• Effective relationships Effective relationships with health care with health care providersproviders

• Planning for care at the Planning for care at the end of lifeend of life

Results of CareResults of Care

• Days lost from Days lost from work/schoolwork/school

• Overall health status Overall health status • Achieving undetectable Achieving undetectable

viral loadviral load• Effective symptom Effective symptom

managementmanagement

Steps to Good CareSteps to Good Care

• Screening and referral for Screening and referral for mental health and social mental health and social servicesservices

Anti-retroviral treatment (anti-Anti-retroviral treatment (anti-HIV drugs)HIV drugs)

Prevention of opportunistic Prevention of opportunistic diseasesdiseases

CD4 counts and viral load CD4 counts and viral load testingtesting

Regular eye examsRegular eye exams VaccinationsVaccinations Preventive counseling for Preventive counseling for

people at risk of contracting people at risk of contracting HIVHIV

Symptom managementSymptom management

Prioritized HIV/AIDS Prioritized HIV/AIDS Quality MeasuresQuality MeasuresExpert

RankPatientRank

HIV Treatment: antiretroviral therapy 1 5 (tie)

Immune assessment: viral load 2 4

HIV Treatment: opportunistic infections 3 1

HIV Prevention: immunizations 4 11

Experience of care: involvement in decision-making

5 2

Experience of care: access to services 6 5 (tie)

Experience of care: access to mental healthservices

7 8

Self-management 8 7

Symptom control 9 9

Functional status 10 3

HIV Prevention: Education 11 10

Building Building Accountability Accountability through Consumer through Consumer ActivationActivation

Measure quality

Educate: awareness campaigns

Disclose and inform

Decision Support

A consumer-friendly A consumer-friendly way to look at quality:way to look at quality:

• The BasicsThe Basics• Staying HealthyStaying Healthy• Getting BetterGetting Better• Living With IllnessLiving With Illness• Changing NeedsChanging Needs

The Most Effective The Most Effective Messages...Messages...

Tapped fear. 1

Example: “One million patients have died in America’s hospitals due to mistakes. Medicines are mismanaged. Tests are wrong. Diagnoses are wrong. Be alert. Ask questions. Take charge. Because what you don’t know can kill you.”

• Basic agreement that this is true.

• Emphasis is on specific decisions and episodes, rather than problems with rules and protocols.

• Succeeds in reaching people, but does it help begin to educate on quality?

The Most Effective The Most Effective Messages...Messages...

Acknowledged need for collective action in effecting large-scale change.

4

Example: “It will take millions of Americans joining together to put quality back in the health care equation. We may not be able to do much alone, but together we can save the world. By acting together to demand change, Americans saved Lake Erie. They made it illegal to drive drunk. Now it’s time to act together for quality health care. Join Patient Power and make a difference.”

• Legitimizes people’s sense of powerlessness and offers an alternative.

• MADD was a familiar and compelling example.

• Porter-Novelli model

• Independent active (19%)• Doctor-dependent active (20%)• Moderate (28%)• Doctor-dependent passive (20%)• Uninvolved (14%)

Information Keyed Information Keyed to Audiencesto AudiencesInformation Keyed Information Keyed to Audiencesto Audiences

It's important to me to be informed about health issues

0% 20% 40% 60% 80% 100%

Independent

MD Active

Moderate

MD Passive

Uninvolved

Building Building Accountability Accountability through Consumer through Consumer ActivationActivation

Measure quality

Educate: awareness campaigns

Disclose and inform

Decision Support

CAHMI Consumer CAHMI Consumer Report FormatReport Format

Building Building Accountability Accountability through Consumer through Consumer ActivationActivation

Measure quality

Educate: awareness campaigns

Disclose and inform

Decision Support

Helping consumers Helping consumers make good decisionsmake good decisionsHelping consumers Helping consumers make good decisionsmake good decisions

• Personalized toolsPersonalized tools via the Internet: via the Internet:– Health conditionHealth condition

– Stage of illness and treatmentStage of illness and treatment

– Communications preferencesCommunications preferences

• Enables patient-to-patient dialogue Enables patient-to-patient dialogue and supportand support

• Educates, improves visit, permits Educates, improves visit, permits comparisons comparisons

CompareYourCare: CompareYourCare: checking ...checking ...

CompareYourCare: CompareYourCare: comparing ...comparing ...

• Employers & unions representing 25 Employers & unions representing 25 million Americansmillion Americans

• Focus on errors in hospital careFocus on errors in hospital care• Three ‘leaps’: Three ‘leaps’:

• Computerized medication management

• High volume procedures

• Intensivist in ICU

• Public awareness campaignPublic awareness campaign• Goal: more consumers ask hard questions, Goal: more consumers ask hard questions,

communicate new expectations, make communicate new expectations, make hospital choiceshospital choices

Case study: Case study: The Leapfrog GroupThe Leapfrog GroupCase study: Case study: The Leapfrog GroupThe Leapfrog Group

A consumer A consumer ‘activation’ strategy:‘activation’ strategy:A consumer A consumer ‘activation’ strategy:‘activation’ strategy:

Labor union

Employer

State government

Health insurer

Patient organization

Policy attitudes and expectations

Interaction with providers

Healthy behavior and self-care

CONSUMERS

UNIFORM LANGUAGE AND TOOLS CHANGED PUBLIC CLIMATE

• Favors personal, individual Favors personal, individual thinking over societal intereststhinking over societal interests

• Difficult to coordinate messages Difficult to coordinate messages and tools with diverse partners in and tools with diverse partners in private sectorprivate sector

• Ultimately, public leadership Ultimately, public leadership needed to change policyneeded to change policy

• Very long-term strategyVery long-term strategy

Challenges ahead ...Challenges ahead ...Challenges ahead ...Challenges ahead ...

Making Quality CountMaking Quality CountLooking ahead to 2010Looking ahead to 2010

• Consumers understand quality.Consumers understand quality.• Consumers know where to get high-Consumers know where to get high-

quality care.quality care.• Consumers manage many health Consumers manage many health

needs themselves.needs themselves.• Consumers demand policies that Consumers demand policies that

reward quality care and foster reward quality care and foster innovation. innovation.