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Being Your Own Being Your Own Best Health AdvocateBest Health AdvocateBest Health AdvocateBest Health Advocate

Carolyn M. Clancy, MDCarolyn M. Clancy, MD

DirectorDirector

Agency for Healthcare Research and QualityAgency for Healthcare Research and Quality

AA&MDSIF Annual Patient and Family Conference in 2010AA&MDSIF Annual Patient and Family Conference in 2010

Bethesda, MD Bethesda, MD –– July 10, 2010July 10, 2010

Bone Marrow Failure DiseasesBone Marrow Failure Diseases

Every year, nearly 20,000 Every year, nearly 20,000 Americans are diagnosed with Americans are diagnosed with aplasticaplastic anemia, MDS or PNHanemia, MDS or PNHSome groups (e.g., ethnic Asians) Some groups (e.g., ethnic Asians) are affected more than othersare affected more than othersWe have come a long way in understanding and We have come a long way in understanding and treating bone marrow failure diseasestreating bone marrow failure diseasesBut we don’t know what causes these diseasesBut we don’t know what causes these diseasesAnd we don’t have And we don’t have a perfect curea perfect cure

So What?So What?

Doctors know a lot, but Doctors know a lot, but we don’t know everythingwe don’t know everything‘Nothing about me, ‘Nothing about me, without me’without me’without mewithout meYou are your own best You are your own best advocate!advocate!

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Being Your Own Being Your Own Best Health AdvocateBest Health Advocate

Health Advocacy as a Health Advocacy as a Critical Quality Critical Quality StrategyStrategyAHRQ Roles & AHRQ Roles & ResourcesResourcesHealth Advocacy: Health Advocacy: Questions and ToolsQuestions and ToolsA Look AheadA Look AheadQ & AQ & A

What Is Health Advocacy?What Is Health Advocacy?

Understanding:Understanding:–– DiagnosisDiagnosis–– OptionsOptions–– TreatmentTreatment

Taking medications safelyTaking medications safelyGetting the right testsGetting the right testsPreparing for surgeryPreparing for surgeryAvoiding errorAvoiding errorBeing an active participant Being an active participant in your carein your care

The Numbers Don’t Lie…The Numbers Don’t Lie…

Health care quality varies Health care quality varies –– A A LOTLOTThere is a substantial gap There is a substantial gap between best possible care between best possible care and actual careand actual careand actual careand actual careUp to 98,000 Americans die Up to 98,000 Americans die each year due to medical each year due to medical errorserrorsUp to 90 million Americans are Up to 90 million Americans are unable to understand basic unable to understand basic information about their own information about their own health status and health carehealth status and health care

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The Quality ChallengeThe Quality Challenge

What Is Quality?What Is Quality?

The RightCare

For The Right Person

At TheRight Time

Health carecosts are rising fast

Health care quality is improving

slowly

A Quality DisconnectA Quality Disconnect

Driving Factors in QualityDriving Factors in Quality

TransparencyTransparency: your : your right to knowright to knowSafety: Safety: reducing risk reducing risk by delivering the best by delivering the best possible carepossible carepossible carepossible carePayment: Payment: to reward to reward the right care, not just the right care, not just a lot of carea lot of careInformationInformation: Keeping : Keeping everyone informed, everyone informed, including your doctors including your doctors and yourselfand yourself

Being Your Own Being Your Own Best Health AdvocateBest Health Advocate

Health Advocacy as a Health Advocacy as a Critical Quality StrategyCritical Quality StrategyAHRQ Roles & AHRQ Roles & ResourcesResourcesHealth Advocacy: Health Advocacy: Questions and ToolsQuestions and ToolsA Look AheadA Look AheadQ & AQ & A

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HHS Organizational FocusHHS Organizational Focus

NIHNIHBiomedical research Biomedical research to prevent, diagnose to prevent, diagnose and treat diseasesand treat diseases

CDCCDCPopulation health and Population health and the role of the role of communitycommunity--based based interventions to interventions to improve healthimprove health

AHRQAHRQLongLong--term and term and systemsystem--wide wide improvement of improvement of health care quality health care quality and effectivenessand effectiveness

AHRQ’s MissionAHRQ’s Mission

Improve the quality, safety, efficiency and Improve the quality, safety, efficiency and effectiveness of health care for all Americanseffectiveness of health care for all Americans

AHRQ PrioritiesAHRQ Priorities

Effective HealthEffective HealthCare ProgramCare Program

AmbulatoryAmbulatoryPatient SafetyPatient Safety

PatientPatient SafetySafetyHealth ITPatient SafetyOrganizationsNew PatientSafety Grants Comparative

Effectiveness ReviewsSafety & Quality Measures,

Medical ExpenditureMedical ExpenditurePanel SurveysPanel Surveys

Comparative Effectiveness Research Clear Findings for Multiple Audiences

Quality & Cost-Effectiveness, e.g.Prevention and PharmaceuticalOutcomesU.S. Preventive ServicesTask ForceMRSA/HAIs

Visit-Level Information onMedical ExpendituresAnnual Quality & Disparities Reports

Drug Management andPatient-Centered CarePatient Safety ImprovementCorps

Other Research & Other Research & Dissemination ActivitiesDissemination Activities

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Reports Show Pace of Reports Show Pace of Improvement is SlowImprovement is Slow

Quality is improving, but the Quality is improving, but the pace is slow (median rate pace is slow (median rate about 2% a year), especially about 2% a year), especially for preventive care and chronic for preventive care and chronic di tdi tdisease management disease management Some areas merit urgent Some areas merit urgent attention, including patient attention, including patient safety and health caresafety and health care--associated infectionsassociated infectionsMany disparities are not Many disparities are not decreasingdecreasing

NHQR Findings: CommunicationNHQR Findings: Communication

Good health care requires Good health care requires communication between communication between patients and doctorspatients and doctors–– From 2002 to 2006, the From 2002 to 2006, the

percentage of adults 18percentage of adults 18--64 64 h t dh t dwho reported poor who reported poor

communication in a communication in a doctor’s visit fell from doctor’s visit fell from 11.6% to 10.4%11.6% to 10.4%

–– Those with public Those with public insurance or no insurance insurance or no insurance report worse report worse communicationcommunication

CAHPS: The Importance of the CAHPS: The Importance of the Consumer’s VoiceConsumer’s Voice

Consumer Assessment of Consumer Assessment of Healthcare Providers and Healthcare Providers and Systems (CAHPS): Surveys in Systems (CAHPS): Surveys in which consumers can assess which consumers can assess the quality of care they receivethe quality of care they receiveSurveys developed for care in:Surveys developed for care in:Surveys developed for care in:Surveys developed for care in:–– Ambulatory settings (e.g., Ambulatory settings (e.g.,

health plans, physician health plans, physician offices)offices)

More than 130 million Americans are enrolled in plans or have More than 130 million Americans are enrolled in plans or have received treatment in facilities for which data are collectedreceived treatment in facilities for which data are collected

–– Facilities (e.g., hospitals, nursing homes, dialysis Facilities (e.g., hospitals, nursing homes, dialysis facilities, home health care services)facilities, home health care services)

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CAHPS Questions: CAHPS Questions: Potential ContentPotential Content

PatientPatient--centered carecentered care–– Information sharing, Information sharing,

coordination of care, coordination of care, management of symptoms, management of symptoms, provider communicationprovider communication

T t t lt tiT t t lt tiTreatment alternativesTreatment alternatives–– Was information about Was information about

treatment alternatives treatment alternatives offered? Information about offered? Information about side effects? side effects?

Patient safetyPatient safety–– Were procedures used to Were procedures used to

ensure that right treatment ensure that right treatment was given to the right patient? was given to the right patient?

Essential Questions Posed by Essential Questions Posed by Comparative Effectiveness Comparative Effectiveness

Essential Questions Posed by Essential Questions Posed by Comparative Effectiveness Comparative Effectiveness

Is this treatment right?Is this treatment right?

Is this treatment right Is this treatment right for mefor me??

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Comparative Effectiveness: AHRQComparative Effectiveness: AHRQEffective Health Care ProgramEffective Health Care Program

Created in 2005Created in 2005To improve the quality, To improve the quality, effectiveness, and efficiency of effectiveness, and efficiency of health care delivered through health care delivered through Medicare Medicaid and SMedicare Medicaid and S--CHIPCHIPMedicare, Medicaid, and SMedicare, Medicaid, and S CHIP CHIP programsprogramsFocus is on what is known Focus is on what is known nownow: : ensuring programs benefit from ensuring programs benefit from pastpast investments in research and investments in research and what research what research gapsgaps are critical to fillare critical to fillFocus is on Focus is on clinical effectivenessclinical effectiveness

The Recovery Act:The Recovery Act:What’s In It for You?What’s In It for You?

The $787 billion Recovery Act The $787 billion Recovery Act included both immediate included both immediate incentives and features incentives and features several longseveral long--term health care term health care

l i l dil i l digoals, including:goals, including:–– Initiating a process to encourage Initiating a process to encourage

widespread adoption of electronic widespread adoption of electronic health recordshealth records

–– Health care cost cutting measuresHealth care cost cutting measures–– Comparative effectiveness Comparative effectiveness

researchresearch

Health Reform LawHealth Reform Law

Patient Protections and Patient Protections and Affordable Care Act Affordable Care Act ––H.R. 3950H.R. 3950Now Public Law 111Now Public Law 111--148148Now Public Law 111Now Public Law 111--148148Insurance reformInsurance reformLower costsLower costsSignificant health care Significant health care quality provisionsquality provisions

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What’s In It for You?What’s In It for You?

Greater choicesGreater choices–– More affordable choice More affordable choice

and competition, oneand competition, one--stop shopping, extends stop shopping, extends p pp gp pp gdependent coveragedependent coverage

Quality, affordable careQuality, affordable care–– Preventive care, more Preventive care, more

primary care practitionersprimary care practitioners

Being Your Own Being Your Own Best Health AdvocateBest Health Advocate

Health Advocacy as a Health Advocacy as a Critical Quality StrategyCritical Quality StrategyAHRQ Roles & AHRQ Roles & ResourcesResourcesHealth Advocacy: Health Advocacy: Questions and ToolsQuestions and ToolsA Look AheadA Look AheadQ & AQ & A

New ‘Healthy Men’ Patient Engagement Campaign

Message:Message: When you get a preventive medical When you get a preventive medical test, you’re not just doing it for yourself. You’re test, you’re not just doing it for yourself. You’re doing it for your family and loved ones.doing it for your family and loved ones.

http://www.ahrq.gov/healthymen/index.htmlhttp://www.ahrq.gov/healthymen/index.html

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5 Steps to Safer Health Care5 Steps to Safer Health Care

1.1. Ask questions if you have Ask questions if you have doubts or concernsdoubts or concerns

2.2. Keep and bring a list of ALL Keep and bring a list of ALL the medicines you takethe medicines you take

33 G t th lt f t tG t th lt f t t3.3. Get the results of any test Get the results of any test or procedureor procedure

4.4. Talk to your doctor about Talk to your doctor about which hospitals is best for which hospitals is best for your health needsyour health needs

5.5. Make sure you understand Make sure you understand what will happen if you what will happen if you need surgeryneed surgery

Five Steps to Safer Five Steps to Safer Health Care. Patient Fact Health Care. Patient Fact Sheet. AHRQ Publication Sheet. AHRQ Publication

Number 04Number 04--M005, M005, February 2004. Agency February 2004. Agency for Healthcare Research for Healthcare Research and Quality, Rockville, and Quality, Rockville,

MD. MD. http://www.ahrq.gov/conshttp://www.ahrq.gov/cons

umer/5steps.htmumer/5steps.htm

Preventing Medical ErrorsPreventing Medical Errors

The single most important The single most important thing you can do to thing you can do to prevent medical errors is prevent medical errors is to be an active participant to be an active participant in your own carein your own carein your own carein your own careThat means taking part in That means taking part in every decision about your every decision about your healthhealthErrors can occur because Errors can occur because patients and doctors fail to patients and doctors fail to communicatecommunicate

Talking with Your ClinicianTalking with Your Clinician

Give informationGive informationGet informationGet informationFollow upFollow up

Understand your Understand your diagnosisdiagnosisChoose qualityChoose quality

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Getting Medical TestsGetting Medical Tests

Why do I need thisWhy do I need thistest done?test done?How is it done?How is it done?Will it hurt?Will it hurt?Will it hurt?Will it hurt?What kind of information will it provide?What kind of information will it provide?Is this the only way to provide this information?Is this the only way to provide this information?What are the benefits and risks of this test?What are the benefits and risks of this test?What do I need to do to prepare for it?What do I need to do to prepare for it?How will I get the results? How will I get the results? What are the next steps?What are the next steps?

Planning for SurgeryPlanning for Surgery

Why do I need surgery?Why do I need surgery?What kind of surgery doWhat kind of surgery doI need?I need?Are there alternatives?Are there alternatives?Are there alternatives?Are there alternatives?What will it cost?What will it cost?What are the benefits and risks of the surgery?What are the benefits and risks of the surgery?What if I don’t have the surgery?What if I don’t have the surgery?What kind of anesthesia will I need?What kind of anesthesia will I need?How much experience do you have doing this How much experience do you have doing this surgery?surgery?

Getting a PrescriptionGetting a Prescription

Track your medicinesTrack your medicinesTake your medications Take your medications safelysafely–– Know what the medication Know what the medication

i f d h t t k iti f d h t t k itis for and how to take itis for and how to take it–– Ask about side effectsAsk about side effects–– Read the labelRead the label–– Ask your pharmacist!Ask your pharmacist!Follow a treatment planFollow a treatment plan–– Ask if you need a refillAsk if you need a refill–– Don’t share your medsDon’t share your meds

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Build Your Own Question ListBuild Your Own Question List

Did your clinician give Did your clinician give you a prescription?you a prescription?Are you scheduled for Are you scheduled for medical tests?medical tests?Did you receive aDid you receive aDid you receive a Did you receive a diagnosis?diagnosis?Are you choosing a Are you choosing a hospital? Health plan? hospital? Health plan? Doctor? LongDoctor? Long--term care?term care?Have you been Have you been recommended for recommended for surgery?surgery?

No matter the No matter the health concern, health concern, you need to ask you need to ask

questions!questions!

www.ahrq.gov/questionsaretheanswer/questionBuilder.aspxwww.ahrq.gov/questionsaretheanswer/questionBuilder.aspx

Being Your Own Being Your Own Best Health AdvocateBest Health Advocate

Health Advocacy as a Health Advocacy as a Critical Quality StrategyCritical Quality StrategyAHRQ Roles & AHRQ Roles & ResourcesResourcesHealth Advocacy: Health Advocacy: Questions and ToolsQuestions and ToolsA Look AheadA Look AheadQ & AQ & A

Keeping the Patient at the CenterKeeping the Patient at the Center

Quality is defined as Quality is defined as care that is safe, timely, care that is safe, timely, effective, efficient, effective, efficient, equitable and patientequitable and patient--centeredcenteredP ti tP ti t t d it d iPatientPatient--centeredness is centeredness is perhaps the most perhaps the most difficult goal to achievedifficult goal to achieveBut it’s the most But it’s the most important, because it’s important, because it’s why we’re herewhy we’re here

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What Does It Mean to Be Patient-Centric?’

Technology and ConsumersTechnology and Consumers

We create tools that make care We create tools that make care more efficient for more efficient for cliniciansclinicians

Consumers already are Consumers already are yycomfortable with the comfortable with the technology; they’re leading us, technology; they’re leading us, not the other way aroundnot the other way around

Consumers are demanding Consumers are demanding tools to make their care more tools to make their care more about themabout them

Take a Strong Role in Your CareTake a Strong Role in Your Care

Remember… YOU must be at Remember… YOU must be at the center of carethe center of care

Information can help you make Information can help you make better decisions, receive a better decisions, receive a higher level of care, reduce higher level of care, reduce medical mistakes and feel medical mistakes and feel better about your health carebetter about your health care

Ask questions, and keep asking Ask questions, and keep asking until you’re satisfied with the until you’re satisfied with the answeranswer

If you need help from a friend or If you need help from a friend or relative, ask for itrelative, ask for it

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Being Your Own Being Your Own Best Health AdvocateBest Health Advocate

Health Advocacy as a Health Advocacy as a Critical Quality StrategyCritical Quality StrategyAHRQ Roles & AHRQ Roles & ResourcesResourcesHealth Advocacy: Health Advocacy: Questions and ToolsQuestions and ToolsA Look AheadA Look AheadQ & AQ & A