informed & shared decision making is for everyone

Jack Fowler, PhD

Senior Scientific Advisor

Informed & Shared Decision Making

is for Everyone

Two Most Cited Reasons that All Decisions Are Not Shared

• Providers can’t or won’t do it

• Many patients don’t want to be informed

and share in decisions, or they are unable

to

Testing Our First 30-Minute BPH Program

0%0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

Not enough About right Too much

Doctors (N=20) VA Patients (N=32)

How would you

rate the amount

of information?

Testing Our First 30-Minute BPH Program

0%

20%

80%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

Not enough About right Too much

Doctors (N=20) VA Patients (N=32)

How would you

rate the amount

of information?

Testing Our First 30-Minute BPH Program

0%

20%

80%

19%

75%

6%0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

Not enough About right Too much

Doctors (N=20) VA Patients (N=32)

How would you

rate the amount

of information?

One Universal Truth

Every time we ask, people (particularly

physicians) underestimate how much

patients value getting information about

their medical conditions and being

involved in decisions.

Actual Length of DVD & Patients’ Rating of Length

Dartmouth patient data collected between July 2005 and July 2009

19%14% 12%

78% 83% 84%

0%

20%

40%

60%

80%

100%

31-38 45-46 50-55

Too short

About right

Too long

minutes minutes minutesn=1847 n=720 n=826

And these groups are specifically

labeled Least Able and Least Interested?

• Those with low literacy or numeracy

• Those with less formal education

• Those 65 or older

Do groups like that need special help with information?

• Definitely!

• Whenever baseline knowledge is

measured, it almost always documents

that those groups are less informed than

average

DECISIONS Survey Data

• National sample of 3000+ adults 40 or

older about 9 different medical decisions

• Each respondent who had faced a

decision was asked 4-5 knowledge

questions relevant to that decision

Mean Knowledge Score by

Education

47%

44%

43%

39%

0% 10% 20% 30% 40% 50%

College Grad or Higher

Some College or 2-Year

High School Grad

Some High School or Less

N=4935Percent Correct

Mean Knowledge Score by Age

42%

45%

46%

43%

0% 10% 20% 30% 40% 50%

Age 75+

Age 65 to 74

Age 55 to 64

Age 40 to 54

N=4946Percent Correct

Do Decision Aids Help People Who Begin with Less

Knowledge?

The most common result of studies is

that good decision aids help those

with less knowledge as much as

those who know more.

At Least 3 Studies Suggest the Less Educated May Distinctively Benefit

That is, that good decision

support can close the gap

between those who start out with

more and less knowledge.

Makoul et al. Compared Video & Print Materials

• Almost half the sample tested as having

marginal or inadequate literacy

• For most comparisons, they found low and

higher literacy benefitted from the

materials, but differences in knowledge

persisted

Mean Asthma Knowledge Scoresby Literacy Level

0%

10%

20%

30%

40%

50%

60%

70%

Limited Literacy Adequate Literacy

Control Print Video

Pe

rce

nt

Co

rre

ct

Mean Asthma Knowledge Scoresby Literacy Level

22%

33%

0%

10%

20%

30%

40%

50%

60%

70%

Limited Literacy Adequate Literacy

Control Print Video

Pe

rce

nt

Co

rre

ct

Mean Asthma Knowledge Scoresby Literacy Level

22%

33%

47%

57%

0%

10%

20%

30%

40%

50%

60%

70%

Limited Literacy Adequate Literacy

Control Print Video

Pe

rce

nt

Co

rre

ct

Mean Asthma Knowledge Scoresby Literacy Level

22%

33%

47%

57%

47%

58%

0%

10%

20%

30%

40%

50%

60%

70%

Limited Literacy Adequate Literacy

Control Print Video

Pe

rce

nt

Co

rre

ct

For Information on Colon Cancer Screening

• Those with lower literacy benefitted

distinctively from the audio-visual (that is,

their knowledge increased more compared

to those given the same info in print form)

• This is an example of how high-quality

information may be particularly valuable

for those with fewer skills

Mean CRC Screening Knowledge Scoresby Literacy Level

59%

82%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

Limited Literacy Adequate Literacy

Print Video

Pe

rce

nt

Co

rre

ct

Mean CRC Screening Knowledge Scoresby Literacy Level

59%

82%

72%

82%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

Limited Literacy Adequate Literacy

Print Video

Pe

rce

nt

Co

rre

ct

Eckman Studied Effects of Decision Aid on Managing Heart

Disease

• Compared knowledge before and after

audio-visual program

• Analysis compared responses of patients

with high and low health literacy levels

Mean Cardiac Knowledge Scoresby Health Literacy Level

64%71%

78% 81%

0%

20%

40%

60%

80%

100%

Lower Health Literacy Higher Health Literacy

Before DA Final Follow-Up

Pe

rce

nt

Co

rre

ct

n=68 n=101

Knowledge Changed,

But What About Behavior?

Body Weight? 1.7%

# of Smokers?

Daily Cigarettes?

2.8%

HigherHealth Literacy

LowerHealth Literacy

27% 21%

23% 46%

Note: Percent of change from Pre-Intervention to Final Follow-up

Understanding Risks

1. Statement of relative risk reduction (“Reduces risk by 13%”)

2. Statement of absolute risk reduction (“8% have stroke without aspirin; 7% with

aspirin”)

3. Add 100-person charts to Statement 2

Galesic et al. studied different ways ofcommunicating risk:

Understanding Risks

3. Add 100-person charts to Statement 2

○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○●●●●●●●●○○

○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○●●●●●●●○○○

Without Aspirin

(“8% have stroke without aspirin; 7% with aspirin”)

With Aspirin

Findings

• Absolute risk statement produced much

better understanding of risks than relative

risk reduction statement

• The icons added considerably to

understanding over just the statement

Findings with Respect to

Literacy

• Compared understanding of risk reduction

for samples of college students and senior

citizens recruited from community centers

• Both groups were stratified by score on a

numeracy test

Percent of Respondents Who UnderstoodRisk Reduction by Numeracy Level and

Quality of Data Presentation

0%

20%

45%42%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Worst Presentation Best Presentation

Low Numeracy, Elderly

Low Numeracy, Student

High Numeracy, Elderly

High Numeracy, Student

Percent of Respondents Who UnderstoodRisk Reduction by Numeracy Level and

Quality of Data Presentation

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Worst Presentation Best Presentation

Low Numeracy, Elderly

Low Numeracy, Student

High Numeracy, Elderly

High Numeracy, Student

What About Interest in Sharing

Decisions?• Various surveys have asked questions

about interest in sharing, and the results

depend heavily on how the question is

asked.

• The best evidence comes from patients

who have actually experienced decision

aids and shared decision making.

At Dartmouth-Hitchcock

• Patients routinely see decision aids

for at least 11 different decisions

• They are surveyed after the see them

Results for Those Aged 65+

• Asked who should make the decision:

– Mainly the doctor

– Shared equally

– Mainly the patient

Who Should Make Decisions?

61%

55%

37%41%

0%

10%

20%

30%

40%

50%

60%

70%

Ages 18 to 64 Ages 65+

Mainly Me Shared Equally

Dartmouth patient data collected between July 2005 and July 2009

n=1418 n=713

Would patients recommend

decision aids to others?

• Definitely

• Probably

• Probably not

• Definitely not

Would You Recommend DA for Others?

26%

20%

69%

76%

0%

10%

20%

30%

40%

50%

60%

70%

80%

Ages 18 to 64 Ages 65+

Definitely not Probably not Probably would Definitely would

Dartmouth patient data collected between July 2005 and July 2009

n=1374 n=687

We Have Looked Since 1989

We have never seen evidence that

older or less educated people push

back against shared decision making

when they are given encouragement

and decision support.

Like the Galesic Study

• We find that well-designed decision

aids are helpful to everyone

• The tools that are not helpful to the

less literate tend not to be particularly

helpful to anyone

Of Course, There Are Challenges

• The less information a person has to start,

the more important it is to have good, clear

decision aids

– We believe that multi-media programs, with

pictures and voice support, are particularly

good

• And they may well need extra,

personalized decision support to get them

where they need to be to form an informed

opinion

We Think the Bottom Line is Clear

• Those with less education and literacy skill are the most in need of decision aids and decision support

• They have the most to gain

• When they are given good tools, they do learn

• When they are encouraged and supported, most of them embrace the chance to help make decisions

THANK YOU!