International Myeloma Foundation: Patient Perspectives on Artificial Intelligence (AI) in Healthcare and Health Literacy Survey

Thank you for participating in this voluntary, anonymous survey that will take less than 10 minutes to complete.

We want to learn how you use technology to understand your health. We are asking about tools like Myelo^© (https://myelo.ai). We also want to know about "Artificial Intelligence" (AI). AI is a computer program that can answer questions or chat with you. Examples include ChatGPT, Gemini, or chat tools in your patient portal.

* Indicates required question

2.What is the highest level of school you finished ?(Required.)

3.What best describes your connection to myeloma?

Patient

Care Partner

Family Member (but not a primary Care Partner)

Friend (but not a primary Care Partner)

4.When were you or the person you care for first diagnosed?(Required.)

Less than 1 year ago

1-3 years ago

3-5 years ago

More than 5 years ago

5.Which best describes the current treatment status of you or the person you care for?

I am undergoing anti-myeloma procedures (e.g. stem cell transplant) and/or taking medicine for myeloma right now.

I am in remission/observation and not currently taking anti-myeloma medicine.

I am currently participating in a clinical trial.

7.How familiar are you with AI tools that can write and chat like a human?(Required.)

I have never heard of them.

I have heard of them, but I don't use them.

I have used them a few times.

I use them often.

8.How familiar are you with Myelo?(Required.)

I have never heard of it.

I have heard of it, but I don't use it.

I have used it a few times.

I use it often.

9.When you have a health question, who or what do you ask FIRST?(Required.)

My doctor/healthcare provider

Friends or family

A general search engine (e.g., Google)

A general AI (e.g., ChatGPT, Claude, Gemini)

A medical AI (e.g., Myelo)

Social Media (e.g., TikTok, Facebook, YouTube)

Specific medical website (e.g., WebMD, Mayo Clinic)

Organizational resources (e.g., webinars, information lines, support groups, etc.)

10.When you have a health question, who or what do you ask? (Select ALL that apply)(Required.)

My doctor/healthcare provider

Friends or family

A general search engine (e.g., Google)

A general AI (e.g., ChatGPT, Claude, Gemini)

A medical AI (e.g., Myelo)

Social Media (e.g., TikTok, Facebook, YouTube)

Specific medical website (e.g., WebMD, Mayo Clinic)

Organizational resources (e.g., webinars, information lines, support groups, etc.)

11.Please select all IMF programs or services that you and/or the person you care for have participated in. (Select ALL that apply)(Required.)

12.The information I have received from Myelo is the same or better than I have received through other IMF programs or services.(Required.)

13.My healthcare team does a good job teaching me about my health.(Required.)

14.I have used Myelo to explain a diagnosis or test result to me.(Required.)

15.I have used Myelo to learn about side effects of medications.(Required.)

16.I have used Myelo to help write a message to my healthcare team or insurance.(Required.)

17.I have used use Myelo to help me think of questions to ask my healthcare team.(Required.)

18.I trust health information provided by Myelo.(Required.)

19.I trust health information provided by Myelo more than general AI.(Required.)

20.I am comfortable with AI drafting a message to me, as long as my healthcare team checks it for accuracy.(Required.)

21.I am comfortable with members of my healthcare team using Myelo to help with my care.(Required.)

22.When seeking health advice, I prefer a specific recommendation rather than multiple options.(Required.)

23.I feel more confident in my healthcare decisions when I do my own research.

24.I understand medical information better when it is presented in a video or audio format rather than in written text.

25.Myelo would be more helpful if it used pictures or charts to explain medical information.(Required.)

26.It would be helpful if my healthcare team provided suggestions for how to best use Myelo.(Required.)

27.What is your biggest fear or concern regarding the use of AI in your healthcare?(Required.)

28.What is your biggest hope regarding the use of AI in your healthcare?(Required.)

29.Imagine you could build a computer tool to help you with your health. What is ONE thing it would do for you? (Examples: make appointments, help with bills, remind me to take pills, etc.)(Required.)

30.Is there anything else you want healthcare teams to know about how you like to learn about your health?(Required.)