Health Literacy and Consumer Roles in Health Care Quality

Judith HibbardUniversity of Oregon

Presented at the Wisconsin Health Policy Forum

June 16, 2004

Current health policy aims to strengthen the role of consumers in health care.

There is a growing recognition that our ability to control costs and improve quality will require an effective partnership with informed and engaged consumers.

Roles for Patients and Consumers

Informed choice Role Using performance information to choose providers Selecting cost-effective evidenced based

treatments Co-producer

Self-care Preventive actions Collaborating with providers Vigilant partner in assuring health care safety

Evaluator Source of data on provider performance Help to define the parameters of quality care

Virtuous Cycle

When consumers take on these three roles they likely: Get better care for themselves

and Contribute to mechanisms that

improve the quality of care for everyone

Informed and activated patients represent a tremendous untapped resource within the health care arenaIt is a resource we can no longer afford to leave untapped

With an aging population and the increased rates of chronic illness there is an urgent need to support patients in these three roles.

Making choices in health care is complex-- requiring higher levels of health literacy

Ultimately we want information to be used to inform choices. Comprehend information Be motivated to use it Be able to information into choices.

0%

10%

20%

30%

40%

50%

60%

70%

80%

I prefer not to have the responsibility for makingdecisions about my Medicare. (% Agree or

Strongly Agree)***

When it comes to making decisions about myMedicare, I prefer to have someone

knowledgeable decide for me. (% Agree orStrongly Agree)***

Inadequate or marginal Barely adequate Adequate

Low literacy Medicare beneficiaries would rather delegate decisions

Literacy:

0%

10%

20%

30%

40%

50%

60%

70%

I have difficulty understandingthe information about my

Medicare coverage. (% Agreeor Strongly Agree)***

Whenever I make a choiceabout my Medicare, I worry it

will be the wrong one. (%Agree or Strongly Agree)***

I am more likely to make awrong choice if I have lots ofdifferent options to choosefrom. (% Agree or Strongly

Agree)***

Inadequate or marginal Barely adequate AdequateLiteracy:

Low literacy Medicare beneficiaries find decisions worrisome.

Using comparative performance reports are:

Difficult to understand Too much information to process Difficult to bring together into a

choice

Stroke – Non-HemorrhagicShort Length of

StayLong Length of

Stay Readmissions

Hospital CasesMortality

RatingLength of

Stay % Rating % Rating% for Any

Reason

% for Complication or Infection

Average Charge

Methodist Division/TJUH 97 6.3 2.2 13.3 17.2 6.2 $28,516

Astoria Hosp 146 4.6 6.5 3.6 17.3 5.2 $14,420

Barrett 292 6.2 1.4 5.0 16.5 5.0 $25,127

North Bend 112 5.3 3.8 2.9 10.2 4.1 $16,386

Palmerton 70 6.6 1.6 7.9 16.5 8.2 $9,569

Parkview 60 6.0 5.4 5.4 28.4 8.3 $25,048

Northrup 83 5.7 8.9 7.6 10.8 4.6 $29,486

Phoenixville 75 4.7 4.4 1.5 10.9 4.6 $16,771

Memorial 135 4.6 4.7 2.3 10.3 1.5 $16,782

Warrem 100 7.6 4.7 18.6 15.1 8.6 $10,115

Significantly higher than expected, Not significantly different than expected, Significantly lower than expected

75%

79%

77%

76%

70%

77%

76%

76%

76%

74%

64%

Plan Average

Plan A

Plan B

Plan C

Plan D

Plan E

Plan F

Plan G

Plan H

Plan I

Plan J

Getting needed carePercent of members who said they had no problem obtaining a personal doctor they like, a referral to see a specialist, necessary care, or timely approvals of care:

Medical Group G

Medical Group D

Medical Group C

Medical Group E

Medical Group J

Medical Group H

Medical Group I

Medical Group B

Medical Group F

Medical Group A

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Overall Quality of Care and ServicesPercentage of patients reporting very good or excellent

Worse Better

CHOOSE AMONG FIVE PLANS

Below is the information about how five plans differ (in terms of member ratings and costs). Use the information in this table to pick the health plans you are most likely to enroll in.

Member ratings of how well doctors

in the plan communicate Overall member ratings of the plan

Premium cost

per month

Co-pay per office visit

Co-pay per prescription

Plan C $75 $8 $8

Plan D $100 $10 $8

Plan E $75 $8 $8

Plan F $100 $10 $10

Plan G

$75 $8 $8

CHOOSE AMONG FIVE PLANS

Below is the information about how five plans differ (in terms of member ratings and costs). Use the information in this table to pick the health plans you are most likely to enroll in.

Member ratings of how well doctors

in the plan communicate Overall member ratings of the plan

Premium cost

per month

Co-pay per office visit

Co-pay per prescription

Plan C $75 $8 $8

Plan D $100 $10 $8

Plan E $75 $8 $8

Plan F $100 $10 $10

Plan G

$75 $8 $8

0 %

1 0 %

2 0 %

3 0 %

4 0 %

5 0 %

6 0 %

P e r c e n t a g e o f r e s p o n d e n t s w h o s c o r e d z e r o o u t o f t w o o n t h e c r i t e r i o nt a s k * * *

I n a d e q u a t e o r m a r g in a l B a r e ly a d e q u a t e A d e q u a t eLiteracy:

Literacy and ability to interpret the Information

What do people do when faced with this degree of complexity?

Reduces their motivation Increases the odds they will

stay with status quo if that is an option

Take short cuts– may leave out important factors

What can we do to help consumers make better decisions?

Make information more evaluable Summarize Interpret Do much of the cognitive work

for the viewer

Regional Hospitals Surgery Non-Surgery Hip/Knee Cardiac Maternity

Hospital A

Hospital B

Hospital C

Hospital D *

Community Hospitals Surgery Non-Surgery Hip/Knee Cardiac Maternity

Hospital F

Hospital G

Hospital H

Hospital I

Hospital J

Hospital K

Hospital L

Hospital M *

Hospital N

Hospital O

Hospital P *

Hospital Q *

What the symbols mean: Fewer mistakes, complications and deaths than expected Average number of mistakes, complications and deaths More mistakes, complications and deaths than expected

With An Evaluable Performance Report

Consumers more likely to note differences

Remember high and low performers Talk to others Make recommendations based on

report

….contributing to the virtuous cycle

Treatment choices:What else supports good decision-making?

Highlight factors that are often overlooked Framing Vividness

Help people to understand what it might feel like to live with a choice Narratives

The information is weighted and used in

choice.

Framing

Decision support tools

Information intermediary

Evaluability

Narratives

Vividness

Highlights meaning.

Easier to use.

Moves person closer to actual experience.

•Comprehension/ interpretation

•Motivation

•Relative valuing of information

Roles for Patients and Consumers

Informed Choice Role Using performance information to choose providers Selecting cost-effective evidenced based treatments

Co-producer Self-care Preventive actions Collaborating with providers Vigilant partner in assuring health care safety

Evaluator Source of data on provider performance Help to define the parameters of quality care

Co-Producer Role

Demands of co-producer role are different than informed choice– still must use information. requires more day to day living and

coping skills Patients need support and

encouragement from their providers

When it comes to chronic disease the patient is the “Captain of the Ship”

To be a “captain” or even a partner in care patients need to have the necessary:

Knowledge Skills Confidence

0%

2%

4%

6%

8%

10%

12%

14%

16%

18%

20%

I know the different medical treatment optionsavailable for my health condition. (% Disagree or

Disagree Strongly)*

I am confident that I can find trustworthy sourcesof information about my health and health

choices. (% Disagree or Disagree Strongly)*

Inadequate or marginal Barely adequate AdequateLiteracy:

Health literacy necessary for co-producer role.

0%

5%

10%

15%

20%

25%

30%

How likely are you to seek out information tolearn about how to cope with health problems?

(% Unlikely or Very Unlikely)***

When your doctor prescribes a new medicationfor you, how likely are you to read about possible

complications? (% Unlikely or Very Unlikely)**

Inadequate or marginal Barely adequate AdequateLiteracy:

Assessing patients’ capability should be part of the “vital signs” taken at a visit

Does the patient understand? Does he/she have the skills and confidence necessary to self-manage?

Patients who are getting good care should, overtime be gaining in their ability to self-manage

Capability to self-manage is an intermediate outcome of care that should be tracked.

If it is important then we should be measuring it! The Patient Activation Measure (PAM)

Assesses the degree to which patients have the skills, knowledge and confidence to manage their condition and to interact effectively with their providers

The measure is a uni-dimensional, interval level, Guttman-like scale

The measure is developmental with 4 stages

35

40

45

50

55

1 2 3 4 5 6 7 8 9 10 11 12 13

Believes Active Role Important 1 When all is said and done, I am the person who is

responsible for managing my health condition. 2 Taking an active role in my own health care is the

most important factor in determining my health and ability to function.

Confidence and Knowledge to Take Action 3 I am confident that I can take actions that will help

prevent or minimize some symptoms or problems associated with my health condition.

4 I know what each of my prescribed medications do. 5 I am confident that I can tell when I need to go get

medical care and when I can handle a health problem myself.

6 I am confident I can tell my health care provider concerns I have even when he or she does not ask.

7 I am confident that I can follow through on medical treatments I need to do at home.

8 I understand the nature and causes of my health condition(s).

Taking Action 9 I know the different medical treatment options

available for my health condition. 10 I have been able to maintain the lifestyle

changes for my health that I have made. 11 I know how to prevent further problems with

my health condition. Staying the Course Under Stress 12 I am confident I can figure out solutions when

new situations or problems arise with my health condition.

13 I am confident that I can maintain lifestyle changes like diet and exercise even during times of stress.

Tailoring care plans to individual patient’s capabilities would likely yield better results.

Providers could then be more targeted in their education and support for patients

When patients are told to take actions they are not capable of, they are more likely to do nothing than if they are given a goal that they can reasonably meet.

Measuring Patient Activation for QI

Processes measures: Are the processes in place to support patient activation?

Outcomes measures: Are patients becoming more activated over time?

Supporting the Co-producer Role

Measurement is the first necessary step

Identify interventions that help patients at different levels of activation is the next step

We are currently at square one– have a steep learning curve ahead.

Roles for Patients and Consumers

Informed choice Role Using performance information to choose providers Selecting cost-effective evidenced based

treatments Co-producer

Self-care Preventive actions Collaborating with providers Vigilant partner in assuring health care safety

Evaluator Source of data on provider performance Help to define the parameters of quality care

Evaluator Role Bring consumers along in the wider

discussion quality gaps and possibilities (what does good care look like?)

Encourage patient involvement in defining elements of quality

Expand to all areas of care Use patient assessments as a basis

for QI

Providers, delivery systems, and purchasers can do much to support and reinforce these roles for consumers.

Making the use of information easier Sanctioning and modeling the use of

outcomes and performance data for informing health care choices

Measuring patient activation and literacy as part of the vital signs taken during a visit

Measuring and reporting on how well providers are supporting patients in their co-producer role

Making wider use of consumers in defining and measuring quality in all areas of care.