Table 1.

Main Topics – Facilitator’s Guide

Topic	Sample Questions	YK	Seattle
General views about research	When you hear the word “research,” what comes to mind?	x	x
Research in the community	What do you know about research being done in the community currently? How did you learn this? Would you like to know more? Why or why not?	x	x
Desired communication (content)	What kinds of information would you like researchers to share about their studies? (with prompts and examples) Would you like researchers to provide updates on how studies are going? Would you like researchers to provide information about results once they are final? Would you like researchers to explain what they hope to learn? Some scientific research can be complicated to explain, especially when the research does not have an immediate impact on health or health care. What is important for researchers to share about this kind of research?	x	x
Desired communication (format)	What are the best ways to share information with the people in your community? (with prompts and examples) When should information be sent proactively, and when should information be made available to those who are interested? How important is it for individuals to choose the type and frequency of communications from the research team?	x	x
Language used to describe heredity, genetic concepts	We have heard that there have always been ways of talking about how things are handed down in families. Can you share any examples of this? Are there Yup’ik words that come to mind that you might use to describe these things?	x
Role of patients/members in research governance	Should members be involved in setting research priorities? If so, how? (with prompts and examples)		x