Evidence-based health care from the consumer’s point of view

Presented by:Kristin L. Carman, Ph.D.

Presented to:Academy for Health Services Research Annual Meeting, Orlando, FL, June 2007

Project team and funding

American Institutes for Research Kristin L. Carman, PhD, Project Director Pamela Dardess Christine Whitmore, PhD Carolyn Vance

McGee & Evers Consulting, Inc. Jeanne McGee, PhD Mark Evers, PhD

Funding California Health Care Foundation

Purpose of our project

To develop a Communication Toolkit – “Explaining evidence-based health care to your workforce”

To build the Toolkit, assess and understand: What are employers and unions doing to

communicate on this topic

What are desired topics and components of the Toolkit

What are consumers’ understanding of different components of EBHC

Methods and data Environmental scan

Literature review Review of websites 10 phone interviews with experts

15 Key stakeholder interviews with information intermediaries representing unions and employees

4 Focus groups (2 union groups, 2 non-union groups)

Cognitive Interviews (Round 1 completed)

Future activities include: 4 additional rounds of cognitive testing of materials Survey of consumer attitudes about evidence-based

concepts (sponsored by the NBGH)

Findings to date – five themes

Comprehension

Relevance

Overload

Trust

Discomfort

Consumers struggle to figure out what is meant by “evidence-based medicine”

THEME # 1 - Comprehension

Where does evidence come from?

Who decides what is “good” evidence?

Who decides when and how guidelines should be applied?

What are “guidelines” or “best practices”?

Reactions we got from consumers “it’s nothing new”

[evidence?] “my doctor tries different things on me until he finds what works.”

“it could be harmful”

“it could be biased”

“it sounds like ‘one size fits all’ and that could get in the way of medical judgment”

It’s often counter-intuitive

When people believe that “more care is “better care,” or that it’s hard to accept any evidence that says otherwise

When people believe that “good quality costs more,” it’s hard to accept evidence that good quality can sometimes cost less

When people believe they are unique, it’s hard to accept uniform standards for care

Consumers may question what evidence-based medicine means for them personally

THEME # 2 – Relevance

Reactions we heard from consumers

People tend to trust their own judgment about “quality” of medical care

Even when they acknowledge possible problems with quality, they think their doctor or care is great

When medical evidence or guidelines are invoked, some think it second guesses their doctor’s good judgment

Consumers tend to be suspicious of employer’s motives in moving toward evidence-based approaches

THEME # 3 - Trust

Basic lack of understanding

Consumers lack awareness and knowledge of how employers and insurance companies are involved in benefit design and the financial side of health care

It’s hard for consumers to appreciate the broader context that impels changes

Distress about rising costs and changes to health care benefits

Consumers are distressed and distrustful, especially when cutbacks in benefits are coupled with higher costs

Consumers get frustrated about new layers of control over what kinds of care are covered, how and where they can get care, and what they have to pay

Consumers often feel that employers are more concerned with the bottom line than with employees’ health

With evidence-based changes to benefits design, distrust can be worse

Hard for consumers to understand how employers might use medical evidence to guide changes to benefits and how the changes might be helpful to consumers

Consumers may feel that their employer is getting into an area where they don’t belong

The irony: trying to empower consumers can have the opposite effect

Frustration that employers are making changes, taking away options, and shifting responsibility to employees

Rather than feeling more empowered about their health, consumers can feel that they are losing control

Being urged to be better informed and more assertive about their health care puts pressure on consumers

THEME # 4 – Discomfort

Patients are used to relying heavily on their doctors and they can feel vulnerable

It can be hard to ask questions, let alone challenge what the doctor advises

Knowing that quality of care can vary a lot is not welcome news if patients feel unable or unwilling to act upon it

It’s hard to challenge the traditional doctor-patient relationship

Consumers already feel overwhelmed with information and short on time.

Needing to understand and deal with medical evidence adds to the overload.

THEME # 5 - Overload

For more information, contact:

Kristin L. Carman, PhD

Principal Research Scientist

American Institutes for Research

1050 Thomas Jefferson St., NW

Washington, DC 20007

202-403-5090

Kcarman@air.org

www.air.org