Form #2 Form #2 Focus Group Guide

Health IT Focus Group Discussion Guide

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Thank you for joining us. Let me tell you what this discussion is about.

I work for Westat, a research company based in Rockville, MD that conducts studies on many different topics, for many different clients. This particular project is for the Agency for Healthcare Quality and Research, a federal government agency with a leading role in research on issues such as the quality and effectiveness of healthcare that people are receiving. What we are doing today is getting your thoughts and ideas on a specific issue within the healthcare system that has come about mostly in the last several years, and will likely continue to be an issue in the future.

Before we go on, I need to make a few things clear.

• First of all, I want to emphasize that there are no right or wrong answers to the questions I’ll be asking of you. The whole point of this discussion is to obtain your thoughts, experiences, and ideas on some topics I’ll be giving you. It doesn’t matter whether you have a positive or a negative opinion about something, as long as it is your honest opinion.

• Next, I want to assure you that every thing we discuss today will remain absolutely confidential: whatever information we obtain from you will not be shared with anyone in a way that identifies who you are.

• Behind me is a one way mirror. Behind it are some people from the Agency for Healthcare Quality and Research we are working with. They came here today so that they can see and hear for themselves what you have to say

• Also, this discussion is being videotaped and audio-taped – this is so that we have something to review later on for writing my report. But I assure you that no one who is not directly involved in this research will see the video.

• We have quite a bit of material to cover in about two hours, and I want everyone to get a chance to speak when they have something to say. So I ask that you try to keep your comments brief and related to the issue at hand. If I interrupt you at some point, please don’t take it personally – it’s just that I have to keep us focused and moving along. And I’d appreciate it if you wait until another person is finished speaking before speaking up yourself.

• Before we start the discussion, why don’t we briefly introduce ourselves. Let’s go around the room and have everyone state their first name, and tell us what kind of work you do, or what you like to do in your free time.

A. Awareness of Health IT

First, I’d like to ask you all to think the doctor visits you’ve had over the last year or two.

Was the office receptionist using a computer?

1. To look up your name when you arrived?

2. To make your next appointment?

3. What else do you recall the receptionist doing on a computer?

How about when you saw the doctor - was the doctor using a computer?

1. What did the doctor appear to be doing with the computer?

2. Did the doctor type notes into a computer during the appointment?

3. Do you think that the doctor typed notes about you into a computer after you left?

4. Did the doctor use a computer to order a prescription for you? (Did the doctor give you a paper prescription or did the doctor send the prescription to a pharmacy by computer?)

5. Did the doctor use a computer to order any blood tests or to order anything else for you?

6. Did the doctor use a computer to look at an x-ray or for any other purpose?

7. Have you ever communicated with your doctor by email?

Do any of you use a computer to do anything related to your personal health, or the health of someone you might care for, such as a child?

1. In what ways do you use a computer for this?

Those of you do not use a computer for anything related to health, have you heard of someone else doing so, perhaps a friend or co-worker?

1. What have you heard about this? (As far as you know, what do they use the computer for?

B. Beliefs and Perceptions of Health IT

Let’s go back to thinking about your doctors…

Do think that your doctor can do a better job by using a computer, or no?

1. Those of you who say “yes,” tell me more about that? In what ways can a computer help your doctor do a better job?

2. Those of you who would say “no,” let’s hear from you.

3. Some of you may have a “mixed opinion” about this – can we hear from you as well?

Let me ask you about some specific things that a doctor might do for a patient – for each, let’s talk about how using a computer for it might be helpful or not….

1. Keeping your progress notes? (Is this done better by keeping notes on a computer or by using paper stored in a folder?)

2. Writing prescriptions? (Is this done better by sending the prescription to the pharmacy by computer or by writing a prescription on a paper prescription pad?)

3. Ordering a blood test? (Is it better to send the order to the laboratory by computer or better to give a paper order that’s sent to the lab)?

4. Getting the results of a blood test? (Is it better for the doctor to get the results on a computer or better to get the results on a piece of paper?)

5. Keeping tabs of diseases that may be spreading, like the flu?

Those of you who told me earlier that you use a computer to do something related to your personal health (or for a close family member)…

1. Tell me about the benefits or advantages this has for you.

2. Are there any disadvantages associated with this?

Those of you who said you do not use a computer to do anything related to health, let’s hear from you….

1. Is this something you’ve ever thought about doing, or no?

2. Is there any particular reason you don’t use a computer for this?

B. Beliefs and Perceptions of Health IT (cont.)

Functionality

Some doctors are now getting clinical advice over a computer. That is, they might use information obtained over the computer to help in deciding upon a treatment for you.

1. Is that a good thing or bad thing?

2. What could go wrong?

Some computer systems allow your medical records to be available anywhere. So if you were far away and had to go a doctor, that doctor would be able to use the computer to quickly get information about you from your doctor here

1. Is that a good thing or bad thing?

2. What could go wrong?

Some computers can detect drug interactions. So if your doctor wrote a prescription on the computer and the prescription conflicted with another prescription, the computer would detect this and alarm your doctor somehow.

1. Is that a good thing or bad thing?

2. What could go wrong?

Medical error

Some people say that computers are good because they make the doctor type on a keyboard. That way, there is never any sloppy handwriting.

1. What do you all think?

2. What could go wrong?

Now suppose that someone makes a mistake and enters something wrong in the computer, as it relates to your health or medical status.

1. How easy or difficult do you think it would be for that mistake to get spotted and corrected?

2. Would it be easier to spot and correct and correct a mistake made on a paper medical record, as opposed to one kept on a computer?

B. Beliefs and Perceptions of Health IT (cont.)

Doctor patient relationship

If you are telling your doctor about some health problems you’ve been having lately, and he or she is entering information into a computer while they talk and listen to you, how would you feel about that?

1. Is this any different from your doctor jotting down notes onto a piece of paper while talking to you?

2. If the doctor used a computer, would you think that the doctor wasn’t paying enough attention to you?

Privacy and confidentiality

Let’s talk about the privacy and confidentiality of medical information. Of course, most people want to be confident that their medical information is not readily available to just anyone.

1. Which is better when it comes to protecting the privacy and confidentiality of your medical information – having the records on a computer, or on paper?

2. What is it about one or the other that’s better for protecting your privacy?

Control of information/secondary use

Suppose a company that makes and sells medicines approaches your doctor and says, “We’re doing some research that might help us come up with a new idea for a product. Wed we would like to get information about your patients. We don’t need their names or addresses - but want all the information about their illnesses and the medication they took.”

1. Would it be okay with you if your doctor handed over this information to the company?

2. Does your medical information being stored on a computer versus a paper record make a difference here?

D. Consumer Engagement

We’ve discussed a lot of ways that doctors could use computers—to keep your medical records; to share your medical records with other doctors; to order prescriptions and medical tests; to get the results of medical tests; to get advice on making a diagnosis or planning a treatment; and even to exchange information with patients.

1. Who should decide how computers are used in medical care, and what the limits and rules concerning them are?

2. Should people like you have any say in that, or should this be left up to others?

So to the extent that people like you are to be given a say in the how these computer systems are used and the limitations and rules placed on them….

1. How do you think that process should work, exactly? (How could your ideas and concerns be communicated? And who would you want to communicate with?)

2. Should the companies that make the computer systems ask you for your input?

3. Should your doctor (or someone at the doctor’s office) ask you for your input?

4. Should a government agency (such as AHRQ) conduct a nationwide survey, where they send you a questionnaire in the mail or call you on the phone to ask you?

5. What about through focus groups like this?

6. At what point should you be asked? (While the designers are still in the “thinking stages” about a computer system? Or during its development? Or perhaps later, just before the doctor begins to use it?)

There are organizations that represent (or claim to represent) various groups of people, who might be inclined to speak on your behalf when it comes to how these computer systems are ultimately used.

1. Are there any organizations you would trust to speak out for you on these matters?

2. Some groups that might speak out include the AARP, the American Cancer Society, and the Heart Foundation. What about groups such as these?

E. Wrap-up

I want to thank you for a useful discussion. Before you go, let me ask my friends behind the mirror if they have any more questions for you.