Key Stakeholders: Patients/Consumers (Survey SSLA)

ATTACHMENT D

SSLA—WEB-BASED SURVEY OF THREE KEY STAKEHOLDER GROUPS
IN TWO ROUNDS

Research Evaluation and Impact Assessment of American Reinvestment and Recovery Act (ARRA) Comparative Effectiveness Research Portfolio

Societal-Stakeholder Survey

Conducted by:

Mathematica Policy Research

for

U.S. Department of Health and Human Services,

Assistant Secretary for Planning and Evaluation

Thank you for participating in this survey. We know that your time is valuable and we greatly appreciate your assistance. The purpose of the survey is to learn about peoples’ opinions on comparative effectiveness research.

The questionnaire will take about 15 minutes, and your answers will be kept private to the extent permitted by law. Your individual answers will never be made public. Results will only be reported in averages. If you do not finish the questionnaire all at once, you may close your browser window and return at a later time by using the same URL. Please complete the questionnaire by [DATE].

Mathematica Policy Research is conducting this survey as part of an evaluation of ARRA-funded comparative effectiveness research projects on behalf of the U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation.

If you have questions about the evaluation, contact the evaluation project director, Eugene Rich, at [email protected] or 202-250-3544. If you have questions about the survey or need help logging in, contact the survey director, Danna Basson, at [email protected] or 510‑830‑3713.

According to the Paperwork Reduction Act of 1995, no persons are required to respond to a collection of information unless it displays a valid OMB control number. The valid OMB control number for this information collection is 0990- . The time required to complete this information collection is estimated to average 15 minutes per response, including the time to review instructions, search existing data resources, gather the data needed, and complete and review the information collection. If you have comments concerning the accuracy of the time estimate(s) or suggestions for improving this form, please write to: U.S. Department of Health & Human Services, OS/OCIO/PRA, 200 Independence Ave., S.W., Suite 336-E, Washington D.C. 20201, Attention: PRA Reports Clearance Officer

The total burden for this questionnaire is 900 hours.

F irst, we’d like to ask you some questions about yourself.

1. Are you an administrator in a health care organization, such as a hospital, medical group, nursing home, or any other type of medical organization?

1 □ Yes GO TO Q.3

0 □ No

2. Are you a doctor, nurse, or other type of health care provider?

1 □ Yes

0 □ No

2a. Do you help make medical decisions for or help provide medical care for an adult family member or friend with a health problem or disability?

By help provide medical care, we mean regularly attend medical appointments, assist with medications, interpret medical evidence, provide transportation to and from medical appointments, among other activities.

1 □ Yes

0 □ No

2b. Would you say that in general your health is…

1 □ Excellent

2 □ Very good

3 □ Good

4 □ Fair

5 □ Poor

FAMILIARITY WITH CER

Different people are more or less familiar with different health conditions, depending on their experiences. We’d like to understand which areas you know most about.

3. Sometimes different organizations use different words for the same thing. Have you heard the phrase “comparative effectiveness research” or “patient-centered outcomes research?”

1 □ Yes

0 □ No GO TO Q.6

4. (IF Q.3=YES) In your own words, how would you define comparative effectiveness research to a colleague or friend who is unfamiliar with it?

5. Please indicate whether the following statements about comparative effectiveness research are true or false.

	MARK ONE PER ROW
	TRUE	FALSE	DON’T KNOW
a. (IF Q.3=YES) Comparative effectiveness research only relies on evidence from studies comparing an intervention to a placebo.	1 □	2 □	d □
b. (IF Q.3=YES) Sometimes comparative effectiveness research will show that the least costly option is the best treatment [TRUE]	1 □	2 □	d □
c. (IF Q.3=YES) Comparative effectiveness research only relies on evidence from randomized trials [FALSE]	1 □	2 □	d □
d. (IF Q.3=YES) Comparative effectiveness research only measures outcomes for the population as a whole instead of outcomes of interest to specific patient groups, such as by age or sex. [FALSE]	1 □	2 □	d □
e. (IF Q.3=YES) (if PROVIDER or ORGANIZATION): Comparative effectiveness research assesses a variety of interventions such as medications, surgical procedures, and medical devices [TRUE]	1 □	2 □	d □
f. (IF Q.3=YES) (if PROVIDER or ORGANIZATION): Comparative effectiveness research does not examine delivery system interventions, like comparing the relative effectiveness of home care vs. a nursing facility for rehabilitation after hip surgery [FALSE]	1 □	2 □	d □
g. (IF Q.3=YES) The purpose of comparative effectiveness research is to provide needed information to doctors rather than to patients [FALSE]	1 □	2 □	d □

EXPERIENCES WITH THE DOCTOR AND OTHER PROVIDERS

Now we’d like to know about the experiences that patients and health care providers have during medical visits. [IF PROVIDER: Please think about your experiences with patients in the last 3 months.]

7. CONSUMERS

How often do you have the following experiences at your health care provider’s office?

	MARK ONE PER ROW
	OFTEN	SOMETIMES	RARELY	NEVER
a. During medical appointments, I bring research evidence from articles or the internet to talk to the doctor or nurse about my medical problems	1 □	2 □	3 □	0 □
b. During medical appointments, doctors or other health care providers discuss research evidence with me about the best way to manage my care	1 □	2 □	3 □	0 □
c. I use information from research to guide my decisions for my own care	1 □	2 □	3 □	0 □

7d. How confident are you that you can identify when it is necessary for you to get medical care?

1 □ Very confident

2 □ Confident

3 □ Somewhat confident

4 □ Not at all confident

7e. How frequently do you take a list of all your prescribed medicines to your doctor visits?

1 □ Always

2 □ Usually

3 □ Sometimes

4 □ Never

7f. How frequently do you bring to your doctor visits a list of questions or concerns you want to cover?

1 □ Always

2 □ Usually

3 □ Sometimes

4 □ Never

8. PROVIDERS

During the last 3 months, how often have you experienced the following when treating your patients?

	MARK ONE PER ROW
	OFTEN	SOMETIMES	RARELY	NEVER
a. During medical appointments with me, patients bring research evidence from articles or the internet to talk to me about their medical problems	1 □	2 □	3 □	0 □
b. During their medical appointments with me, I discuss research evidence with my patients about the best way to manage their care	1 □	2 □	3 □	0 □
c. I use information from comparative effectiveness research to guide my recommendations for my patients	1 □	2 □	3 □	0 □

ORGANIZATIONS

9. How often do your doctors use information from comparative effectiveness research to guide their recommendations for their patients?

1 □ Often

2 □ Sometimes

3 □ Rarely

0 □ Never

10. IF PROVIDER OR ORGANIZATION: How often do [IF PROVIDER: you/IF ORGANIZATION: your providers] treat the following conditions?

IF CONSUMER: How often do you think or read about the following conditions when managing your health or the health of your family members?

	MARK ONE PER ROW
	OFTEN	SOMETIMES	RARELY	NEVER
a. Diabetes	1 □	2 □	3 □	0 □
b. Depression	1 □	2 □	3 □	0 □
c. Coronary artery disease	1 □	2 □	3 □	0 □
d. Attention deficit disorder	1 □	2 □	3 □	0 □
e. Low back pain	1 □	2 □	3 □	0 □
f. Prostate cancer	1 □	2 □	3 □	0 □

Comparative effectiveness research is a type of health care research that compares the results of one approach for managing a health problem to the results of other approaches. Comparative effectiveness research usually compares two or more types of treatment, such as different drugs, for the same disease. Comparative effectiveness research also can compare types of surgery or other kinds of medical procedures and tests.

For the following items, we’d like to know whether you have the [IF PROVIDER OR ORGANIZATION: comparative effectiveness] research evidence you need when treating or thinking about these conditions.

[IF Q.10a = RARELY OR NEVER, SKIP Q.11]

11. [IF PROVIDER: When treating diabetes, I have the information I] [IF ORGANIZATION: When treating diabetes, our providers have the information they] [IF CONSUMER: When thinking about diabetes, I have the information I] need about which treatments work best.

1 □ Most of the time

2 □ Some of the time

3 □ Almost never

11a. IF PROVIDER OR ORGANIZATION: How important is comparative effectiveness research on diabetes to your [IF PROVIDER: practice] [IF ORGANIZATION: organization]?

1 □ Very important

2 □ Somewhat important

3 □ Not at all important

11b. IF CONSUMER: How important is research evidence on diabetes to you when making decisions about how to manage your health?

1 □ Very important

2 □ Somewhat important

3 □ Not at all important

11c. IF Q.11a=very or somewhat important OR IF Q.11b=very or somewhat important – Are you aware of specific [IF PROVIDER OR ORGANIZATION: comparative effectiveness] research on diabetes?

1 □ Yes

0 □ No GO TO Q.11

11d. IF Q.11c=Yes – Please provide an example of [IF PROVIDER OR ORGANIZATION: comparative effectiveness] research on diabetes that you’re familiar with.

[IF Q.10b = RARELY OR NEVER, SKIP Q.12]

12. [IF PROVIDER: When treating depression, I have the information I] [IF ORGANIZATION: When treating depression, our providers have the information they] [IF CONSUMER: When thinking about depression, I have the information I] need about which treatments work best.

1 □ Most of the time

2 □ Some of the time

3 □ Almost never

12a. IF PROVIDER OR ORGANIZATION: How important is comparative effectiveness research on depression to your [IF PROVIDER: practice] [IF ORGANIZATION: organization]?

1 □ Very important

2 □ Somewhat important

3 □ Not at all important

12b. IF CONSUMER: How important is research evidence on depression to you when making decisions about how to manage your health?

1 □ Very important

2 □ Somewhat important

3 □ Not at all important

12c. IF Q.12a=very or somewhat important OR IF Q.12b=very or somewhat important – Are you aware of specific [IF PROVIDER OR ORGANIZATION: comparative effectiveness] research on depression?

1 □ Yes

0 □ No GO TO Q.13

12d. IF Q.12c=Yes – Please provide an example of [IF PROVIDER OR ORGANIZATION: comparative effectiveness] research on depression that you’re familiar with.

[IF Q.10c=RARELY OR NEVER, SKIP Q.13]

13. [IF PROVIDER: When treating coronary artery disease, I have the information I] [IF ORGANIZATION: When treating coronary artery disease, our providers have the information they] [IF CONSUMER: When thinking about coronary artery disease, I have the information I] need about which treatments work best.

1 □ Most of the time

2 □ Some of the time

3 □ Almost never

13a. IF PROVIDER OR ORGANIZATION: How important is comparative effectiveness research on coronary artery disease to your [IF PROVIDER: practice] [IF ORGANIZATION: organization]?

1 □ Very important

2 □ Somewhat important

3 □ Not at all important

13b. IF CONSUMER: How important is research evidence on coronary artery disease to you when making decisions about how to manage your health?

1 □ Very important

2 □ Somewhat important

3 □ Not at all important

13c. IF Q.13a=very or somewhat important OR IF Q.13b=very or somewhat important – Are you aware of specific [IF PROVIDER OR ORGANIZATION: comparative effectiveness] research on coronary artery disease?

1 □ Yes

0 □ No GO TO Q.14

13d. IF Q.13c=Yes – Please provide an example of [IF PROVIDER OR ORGANIZATION: comparative effectiveness] research on coronary artery disease that you’re familiar with.

[IF Q.10d=RARELY OR NEVER, SKIP Q.14]

14. [IF PROVIDER: When treating attention deficit disorder, I have the information I] [IF ORGANIZATION: When treating attention deficit disorder, our providers have the information they] [IF CONSUMER: When thinking about attention deficit disorder, I have the information I] need about which treatments work best.

1 □ Most of the time

2 □ Some of the time

3 □ Almost never

14a. IF PROVIDER OR ORGANIZATION: How important is comparative effectiveness research on attention deficit disorder to your [IF PROVIDER: practice] [IF ORGANIZATION: organization]?

1 □ Very important

2 □ Somewhat important

3 □ Not at all important

14b. IF CONSUMER: How important is research evidence on attention deficit disorder to you when making decisions about how to manage your health?

1 □ Very important

2 □ Somewhat important

3 □ Not at all important

14c. IF Q.14a=very or somewhat important OR IF Q.14b=very or somewhat important – Are you aware of specific [IF PROVIDER OR ORGANIZATION: comparative effectiveness] research on attention deficit disorder?

1 □ Yes

0 □ No GO TO Q.15

14d. IF Q.14c=Yes – Please provide an example of [IF PROVIDER OR ORGANIZATION: comparative effectiveness] research on attention deficit disorder that you’re familiar with.

[IF Q.10e=RARELY OR NEVER, SKIP Q.15]

15. [IF PROVIDER: When treating low back pain, I have the information I] [IF ORGANIZATION: When treating low back pain, our providers have the information they] [IF CONSUMER: When thinking about low back pain, I have the information I] need about which treatments work best.

1 □ Most of the time

2 □ Some of the time

3 □ Almost never

15a. IF PROVIDER OR ORGANIZATION: How important is comparative effectiveness research on low back pain to your [IF PROVIDER: practice] [IF ORGANIZATION: organization]?

1 □ Very important

2 □ Somewhat important

3 □ Not at all important

15b. IF CONSUMER: How important is research evidence on low back pain to you when making decisions about how to manage your health?

1 □ Very important

2 □ Somewhat important

3 □ Not at all important

15c. IF Q.15a=very or somewhat important OR IF Q.15b=very or somewhat important – Are you aware of specific [IF PROVIDER OR ORGANIZATION: comparative effectiveness] research on low back pain?

1 □ Yes

0 □ No GO TO Q.16

15d. IF Q.15c=Yes – Please provide an example of [IF PROVIDER OR ORGANIZATION: comparative effectiveness] research on low back pain that you’re familiar with.

[IF Q.10f=RARELY OR NEVER, SKIP Q.16]

16. [IF PROVIDER: When treating prostate cancer, I have the information I] [IF ORGANIZATION: When treating prostate cancer, our providers have the information they] [IF CONSUMER: When thinking about prostate cancer, I have the information I] need about which treatments work best.

1 □ Most of the time

2 □ Some of the time

3 □ Almost never

16a. IF PROVIDER OR ORGANIZATION: How important is comparative effectiveness research on prostate cancer to your [IF PROVIDER: practice] [IF ORGANIZATION: organization]?

1 □ Very important

2 □ Somewhat important

3 □ Not at all important

16b. IF CONSUMER: How important is research evidence on prostate cancer to you when making decisions about how to manage your health?

1 □ Very important

2 □ Somewhat important

3 □ Not at all important

16c. IF Q.16a=very or somewhat important OR IF Q.16b=very or somewhat important – Are you aware of specific [IF PROVIDER OR ORGANIZATION: comparative effectiveness] research on prostate cancer?

1 □ Yes

0 □ No GO TO Q.17

16d. IF Q.16c=Yes – Please provide an example of [IF PROVIDER OR ORGANIZATION: comparative effectiveness] research on prostate cancer that you’re familiar with.

18. How often do [IF PROVIDER OR CONSUMER: you / IF ORGANIZATION: your providers] look for information on the comparative effectiveness of different treatment approaches for [IF CONSUMER: your / IF PROVIDER: your patients’ / IF ORGANIZATION: their patients’] problems?

1 □ Often

2 □ Sometimes

3 □ Rarely

4 □ Never

19. [IF PROVIDER OR CONSUMER] How often do [IF PROVIDER OR CONSUMER: you / IF ORGANIZATION: your providers] use information on the comparative effectiveness of different treatment approaches for [IF CONSUMER: your / IF PROVIDER: your patients’ / IF ORGANIZATION: their patients’] problems?

1 □ Often

2 □ Sometimes

3 □ Rarely

4 □ Never

20. Are you aware of any approaches or tools for assisting patients in their use of comparative effectiveness research in clinical decision making?

1 □ Yes

2 □ No

21a. [IF Q20=YES AND PROVIDER OR CONSUMER] How often do you [IF CONSUMER: use / IF PROVIDER: recommend] tools like this to compare the effectiveness of different treatment options for your [IF PROVIDER: patients’] health problems?

1 □ Often

2 □ Sometimes

3 □ Rarely

4 □ Never

21b. [IF Q20=YES AND ORGANIZATION] How often do your providers recommend tools like this to help their patients compare the effectiveness of different treatment options for their health problems?

1 □ Often

2 □ Sometimes

3 □ Rarely

4 □ Never

CONFIDENCE IN UNDERSTANDING HEALTH INFORMATION

22. [IF CONSUMER] How confident are you in your ability to use information from research evidence to make health decisions when there are multiple treatment options?

1 □ Very confident

2 □ Somewhat confident

3 □ Not at all confident

23. [IF PROVIDER OR ORGANIZATION] How confident are you about your [IF ORGANIZATION: your providers’] ability to use the findings from comparative effectiveness research to make treatment decisions when there are multiple treatment options?

1 □ Very confident

2 □ Somewhat confident

3 □ Not at all confident

24. [IF PROVIDER] When making treatment decisions, I am confident I have enough information about the best treatment options for different groups of people, such as men and women, different racial or ethnic groups, and people with co-occurring illnesses.

1 □ Very confident

2 □ Somewhat confident

3 □ Not at all confident

OPINIONS ABOUT COMPARATIVE EFFECTIVENESS RESEARCH

People have different expectations about the consequences of comparative effectiveness research. We would like to hear your opinions about different aspects of comparative effectiveness research. For the following items, please indicate the point on the scale that comes closest to your opinion.

25. When advising their patients, doctors currently…

…do NOT always have all the comparative effectiveness information they need		OR									…DO already have all the comparative effectiveness information they need
0	1		2	3	4	5	6	7	8	9		10

26. Comparative effectiveness research will…

Confuse patients about treatment options		OR									Help patients to be more Informed about treatment options
0	1		2	3	4	5	6	7	8	9		10

27. Increasing patients’ use of comparative effectiveness research in their decisions will…

Reduce patients’ medical costs		OR									Increase patients’ medical costs
0	1		2	3	4	5	6	7	8	9		10

28. Comparative effectiveness research will be used to…

limit patients’ access to effective new treatments		OR									increase patients’ access to effective new treatments
0	1		2	3	4	5	6	7	8	9		10

We’d like to know how strongly you agree or disagree with the following statements.

29. [IF ORGANIZATION] It is the responsibility of our organization and others like us to promote use of comparative effectiveness research in treatment decisions.

1 □ Strongly agree

2 □ Agree

3 □ Neither Agree nor disagree

4 □ Disagree

5 □ Strongly disagree

29a. Physicians and other providers have a responsibility to encourage patients to be meaningful participants in using comparative effectiveness research in treatment decisions.

1 □ Strongly agree

2 □ Agree

3 □ Neither Agree nor disagree

4 □ Disagree

5 □ Strongly disagree

30. [IF PROVIDER OR ORGANIZATION] Information from comparative effectiveness research can motivate patients to adhere more closely to the medical therapies we prescribe.

1 □ Strongly agree

2 □ Agree

3 □ Neither Agree nor disagree

4 □ Disagree

5 □ Strongly disagree

30a. [IF CONSUMER] Information from comparative effectiveness research can motivate patients like me to adhere more closely to the medical therapies doctors prescribe.

1 □ Strongly agree

2 □ Agree

3 □ Neither Agree nor disagree

4 □ Disagree

5 □ Strongly disagree

31. [IF CONSUMER] If your health care provider’s recommendation disagreed with recently published findings from comparative effectiveness research, who would you trust more – your provider or the research?

1 □ Doctor

2 □ Research

3 □ Not sure

32. [IF CONSUMER] Why do you say that?

33. [IF ORGANIZATION: If your provider’s] recommendation disagreed with recently published findings from comparative effectiveness research, who should the patient trust more – the provider or the research?

1 □ Provider

2 □ Research

DEMOGRAPHICS

Finally, we would like to ask a few questions about you.

34. First, what is your gender?

1 □ Male

2 □ Female

35. What is your age?

| | | YEARS OLD

36. Are you Hispanic or Latino?

1 □ Yes

0 □ No

37. What is your race?

MARK ALL THAT APPLY

1 □ American Indian or Alaska Native

2 □ Asian

3 □ Black or African American

4 □ Native Hawaiian or Other Pacific Islander

5 □ White

38. [IF CONSUMER] What is the highest level of education you completed?

MARK ONLY ONE

1 □ Less than high school

2 □ High school or GED

3 □ Some college

4 □ College degree

5 □ Postgraduate degree

39. [IF CONSUMER] How many children under the age of 18 currently live with you?

| | | CHILDREN

40. So that we may send you a $20 gift card as a token of our appreciation, please complete the address where you would like us to mail the card.

Street: Apt. #

City: State:

Zip Code:

Thank you for your time. Your responses will help us understand more fully how people view and understand comparative effectiveness research.