18 Navigator Interview

February 25, 2019

Educator/Navigator Discussion Guide

National Cancer Institute Environmental Scan

OMB No.: 0925-0046

Expiration Date: 07/31/2019

Collection of this information is authorized by The Public Health Service Act, Section 411 (42 USC 285a). Rights of participants are protected by The Privacy Act of 1974. Participation is voluntary, and there are no penalties for not participating or withdrawing at any time. Refusal to participate will not affect your benefits in any way. The information collected will be kept private to the extent provided by law. Names and other identifiers will not appear in any report. Information provided will be combined for all participants and reported as summaries. You are being contacted in per-son or by phone to complete this form so that NCI can better serve the researcher audience

Public reporting burden for this collection of information is estimated to average 45 minutes per response, including the time for reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing and reviewing the collection of information. An agency may not conduct or sponsor, and a person is not required to respond to, a collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden to: NIH, Project Clearance Branch, 6705 Rockledge Drive, MSC 7974, Bethesda, MD 20892-7974, ATTN: PRA (0925-0046). Do not return the completed form to this address.

INTRODUCTION FOR RESPONDENTS

Thank you very much for agreeing to participate in this discussion. My name is ____ and I work for a third-party marketing company called Heartbeat. We are conducting an interview on behalf of the National Cancer Institute (NCI) to better understand the available types of cancer-related information as well as the most helpful ways of sharing this information.

The focus of today’s call is to understand the type of cancer information you look for in the course of your work, where you look to find it, and how you access it.

Here are some things to know before we get started:

• This interview will last about 45 minutes.

• Participation is voluntary and there are no penalties for not participating or withdrawing at any time. Refusal to participate will not affect your benefits in any way.

• The information collected will be kept private to the extent provided by law. Names and other identifiers will not appear in any report. Information provided will be combined for all participants and reported as summaries.

• We will be recording audio from the interview. Only Heartbeat and NCI staff who are associated with this project will hear the recording, and we will not include your name or personal information in the recording. The recordings are a memory aid for me so I can go back later to recall what happened during each interview. Are you okay if we record this conversation? (If yes, start recording. If no, do not record.)

• Some people from my team and from the NCI may be listening in remotely to take notes and record your comments. Your honest and candid feedback will be very valuable, so even though people may be listening in, please speak openly about your opinions and experiences. There are no wrong responses to the questions I’ll be asking.

• If you do not want to answer any of my questions, you do not have to. Please just say so, and we will move on. And of course, you can stop at any time.

Before we start, can you please confirm that you received the image that was sent to you prior to this call? Secondly, how do you like to be referred to? Do you have any questions before we begin?

Warm Up Question

Can you please tell us a little about your work setting?

Seeking Content/Information Questions

1. What is your role in supporting cancer patients and caregivers throughout the patient journey?

   • Probe: role at diagnosis, treatment, remission, recurrence and end of life

2. What type of cancer information do you typically look for in order to support the patients you work with? At each point of the patient’s journey?

   • Probe: patient materials on screening, cancer in general, specific type of cancer, treatment, survivorship, end-of-life, and sources of emotional or financial support.

   • Which resources, if any, are you required to use by your institution?

   • Probe: What are the biggest gaps in terms of finding this information?

3. What trusted sources (websites, books, databases, conferences etc.) do you go to for this information?

   • Probe: Specifically, on digital sources, what kind of devices do you use to access cancer information (e.g., smart phones, desktop, tablet, etc.)?

   • Probe: What makes these sources “trusted”?

(Patient Focused) Seeking Content/Information Questions

4. In your experience, at what point do patients or caregivers seek or require educational or support information?

   • Probe: What exactly are they seeking? What are some of the questions they ask or exact words they use when talking to you about their needs?

   • Probe: How does the information patients seek differ from what caregivers seek?

5. What do you find to be the most effective ways for providing information to patients and caregivers (e.g., during your meetings with patients, via email, via print materials, via phone, on your organization’s website, directing them to websites, use of a patient portal, etc.)?

   • Probe: What do you currently use in place of printed materials?

   • Probe: Can you give me more context about when you look up information for your patients specifically how do you search for that kind of information? Do you have a “go to” resource you use or is it more on a “case by case” basis? At what point during your interaction with the patient (before, during or after) do you search for this information?

6. Where do you see the biggest gaps in terms of educational or support information for patients and caregivers?

Cancer.gov and PDQ Familiarity

Cancer.gov

7. Are you familiar with Cancer.gov? [If not, skip to Question 9.]

   • Probe: Can you please open the file that was sent to you prior to this call? Is this the website you were referring to in your previous response?

   • Probe: Do you consider Cancer.gov to be a trusted source of information?

8. What do you use Cancer.gov for?

   • Probe: What prompts you to use it?

   • Probe: credibility, trustworthiness, comprehensiveness

PDQ

9. Are you familiar with PDQ (Physician Data Query)? [If not, skip to Question 11.]

10. What do you use PDQ for?

    • Probe: What prompts you to use it?

    • Probe: credibility, trustworthiness, comprehensiveness, evidence-based site

Future Engagement Methods and Technologies

11. What technologies have you adopted into your practice in the past couple of years?

    • Probe: EHR, telehealth, wearables for patients, virtual assistant

    • Probe: Do you consider yourself an early adopter or do you tend to stick with technologies you already know?

Closing Question

12. What else would you like to share about accessing or using cancer information?

Thank you for your time. This now concludes the interview. Your answers are very helpful and will be used in the analysis phase. Have a good day.