PACT Lab Caregiver and Patient Focus Groups; Point of Care (POC) Patient and Provider Focus Groups; Telehealth in the PADRECC: Veteran Focus Group; COMM Patient Survey; Office of Public Health Survey

OMB 2900-0770
Estimated Burden: 2 hours

Assessing Attitudes about Point of Care Research (POC-R)

Patient Focus Group Script

The Paperwork Reduction Act of 1995: This information is collected in accordance with section 3507 of the Paperwork Reduction Act of 1995. Accordingly, we may not conduct or sponsor and you are not required to respond to, a collection of information unless it displays a valid OMB number. We anticipate that the time expended by all individuals who participate in this focus group will average 120 minutes. This includes the time it will take to process and respond to moderator questions. The purpose of this focus group is to discuss patient and provider issues on the use, impact and ideas for new ways to conduct research by way of the Point of Care research (POC-R). The results of this group discussion will lead to improvements in the quality of service delivery by the Veterans Health Administration. Participation in this focus group is voluntary and failure to respond will have no impact on benefits to which you may be entitled.

Patient Focus Group Script

I. WELCOME AND INTRODUCTIONS

Welcome and thank you all for coming this <<morning/afternoon>>. My name is ___________ and I will be leading the discussion group today. (Introduce co-facilitators and helpers). My role as the moderator is to direct the content and flow of the discussion and to make sure that we cover the main topics. I am also joined by Charlene Weir, the Principal Investigator for this study. Also present is _______ who is coordinating the study at the ______ VA. She will be taking notes and making sure our equipment is working properly.

Has anyone ever participated in a focus group before?

Well, a focus group is an informal group discussion, and hopefully an enjoyable process. Basically, it is a way to gather information about a specific topic. We are interested in your thoughts and opinions.

This study involves conducting focus groups for either providers or patients from 13 different VA facilities across the country. The study is supported by a grant from the Veterans Health Administration.

Objectives and Agenda

First let me explain the overall purpose of this focus group. Our purpose today is to talk about implementation of a new way to do research in the VA called Point of Care research (POC-R). Our discussion today will be about (put on board):

1) How POC-R might be used in the VA.

2) How POC-R might impact clinical care.

3) Ideas for how to inform veterans about POC-R in the VA.

Our conversation will include discussions about patient and provider issues, ethics of POC-R and other related topics.

Procedures

Let us talk about how this group discussion works.

If you don’t understand something we are talking about, please let us know.

What will happen

We will ask you a few initial questions and then we will ask for you to share a few personal experiences. Then we will ask you to read and respond to a couple of vignettes. The case examples are about a typical POC-R study and two variations. Please feel free to ask questions and I encourage you to jot down any comments or reactions you may have as we go along. This information will be really helpful in developing different types of POC-R studies and also for developing educational materials about the POC-R program, so we will collect them at the end of the session.

< hand out paper to jot down notes or you can write comments on the vignette as well>

Throughout the session, I will be asking specific questions to focus the discussion.

Ground Rules

We’ll have a few ground rules for today’s discussion:

Our discussion will last for approximately 1 hour. I have a lot of questions that I would like to ask. Therefore, I would like to quickly go over some guidelines for our discussion.

• First, there are no right or wrong answers. This is VERY important. All of your thoughts and ideas are important to us. You are the experts and that is why we have invited you here. We ask that you feel free to speak your mind and remember that everyone will respect your opinions.

• Please speak up so everyone can hear and so that the tape recorder picks up your comments.

• All of the information collected today will be completely confidential. Our discussion will be tape recorded. You are free to leave at any time, without any penalty. All information from the taped discussion will be transcribed and all references to names eliminated. We can turn the tape recorder off at any time. We will prepare a report using the tapes. Our report will not make reference to any one of you by name. By assuring your anonymity, I hope that you will speak openly and candidly about today’s topic.

• All of your comments will be very helpful. Keep in mind that we are just as interested in negative comments as we are in positive comments.

• Please do not engage in arguments with other group members.

• Before we begin, I want to remind you that we will be tape recording the discussion so we don’t miss any of your valuable comments. I am going to turn on the tape now. I’d also like to remind you that once the tapes are transcribed and we have incorporated all your comments, all tapes will be destroyed. (Turn on tape recorder)

We appreciate the time you are generously giving to this important topic this morning/afternoon/evening.

Are there any questions before we begin? Okay, let’s get started!

Icebreaker: In order to get acquainted, let’s go around the room, please tell us your first name, how long you have been a patient at this VA, in what branch of the military you served, and something you are passionate about.

Present vignettes: Describe critical elements of POC-R listing them on board and/or in handout.

The case examples describe two different options which are currently used but which we don’t have enough information if one is better than the other such as 1) two different drugs which are similar; two different types of diagnostic tests (e.g., virtual colonoscopy vs. conventional colonoscopy); two different treatments (2 different skin topical ointments for a skin condition), two different surgical procedures (total hip replacement v. partial hip replacement) for hip fracture.

< SAMPLE QUESTIONS>

1. VA is committed to improving quality of medical care. If your physician or healthcare provider wanted to try something new in clinical care because they thought it might improve the overall quality of care in VA or reduce the cost of care how would you feel about that?

2. Have any of you participated in a research study before? How do you feel about participating in research studies?

3. If you were presented with the option to enroll in a POC-R study during outpatient care or inpatient care what would your response likely be?

4. Do you have any concerns about issues of getting the right treatment, being denied a treatment or not being told what is going on during your care with a study like this? These are ethical issues; do you have any concerns? << provide examples, if needed>>

5. How would you feel if your healthcare provider told you that there were two different ways to care for you and that he/she did not know which care/ treatment was best for you? <<Relate question to different treatment categories (e.g. which medication was better, which diagnostic test, etc (see above under vignette examples) Patients may respond differently depending on the focus of the research How would this impact your relationship? >>

6. What factors would make you NOT want to participate?

7. Do you see POC-R as valuable for improving quality of care?

8. How important are other patients’ opinions in your willingness to participate?

9. What kind of incentives would be adequate for you to participate?

10. Do you think patients should be consented for all research studies? In the example above (repeat different scenarios) do you think your healthcare provider should get your consent? <<<Give them more background information about the current consent process and the program’s plan to either omit or use an alternate method (general consent, verbal consent)>>> Patients who participate in VA research are asked to sign a consent form. We also ask you to sign a form to collect information from your medical record.

11. Would you be willing to sign a general consent at the time of your care inviting you to participate in any VA POC-R (i.e., there were 2 different ways to provide care/ treat you and there was not enough information to know which was best for you so the decision would be based on the computer’s selection) your provider offered?

12. If you were willing to sign a general consent form are there any limitations/statements that you want to have on the form?

13. Would you be willing to give verbal consent to your provider?

14. Would you also be willing to let researchers at the VA access your medical record?

V. Wrap Up :

Those are all the questions we have today. Is there anything else you would like to tell us? I’d like to collect all your notes.

Thank you for all your great input today/tonight. This will be very helpful.