The Maine Cancer Genomics Initiative (MCGI) is developing educational materials and resources for Maine cancer patients about cancer genomics and personalized medicine. We are looking for patients and family members to help us improve our efforts in developing these materials. Working with the MCGI team, patient and family advisors will help improve cancer patients’ experiences and understanding of available resources.
What are the responsibilities of an MCGI patient and family advisor?
As a patient and family advisor, you will:
- Partner with the MCGI team for short and long-term projects
- Talk about your experience. Advisors help by talking about their health care experiences with genomic and genetic testing.
- Review or help create educational or informational materials, based on your own experiences as a patient or family member of someone with cancer. Advisors provide a patient perspective that help us make forms or educational handouts easier for all patients and family members to understand and use.
- Partner with the community. Discuss what programs or resources could be offered in the community to help support a better understanding of cancer genomics and personalized medicine.
- Volunteer your time (usually about two hours per month). Participation can be in the form of meetings, virtual meetings, emails, or phone conversations.
What are the qualifications to become a patient and family advisor?
You do not need any special qualifications to be an advisor.
What’s most important is your experience as a patient or family member. We will provide you with any other background you need.
Why should you become a patient and family advisor?
Patient and family advisors provide a voice that advocates for providing educational resources centered on patient-and family-identified needs, rather than the assumptions of what patients and families may want.
- When you or your family member visited a doctor’s office, did you feel confused by any of the information that was shared with you? Did you leave with questions that were not answered? Were you unsure of what questions to ask, or were you afraid to ask certain questions?
- Do you have ideas about how to make sure other patients and families get the best information possible?
If your answer to any of the above questions is yes, we are looking for patient and family advisors like you to give us feedback and ideas to help us improve the quality of education for patients with cancer.
Is being a patient and family advisor right for you?
- Being a patient and family advisor may be a good match with your skills and experiences if you can:
Speak up and share suggestions and potential solutions to help improve cancer care for others
- Talk about your experiences as a patient or family member—but also think beyond your own personal experiences
- Talk about both positive and negative care experiences and share your thoughts on what went well and how things could have been done differently
- Provide consultation on developing new, or changing existing educational resources (consultation can be in the form of meetings, virtual meetings, emails, or phone conversations)
- Occasionally participate in focus groups and surveys
For more information about being a patient and family advisor, including how to volunteer, contact Sheila at:
Call: 860-837-2326 (M-F 8:00am-4:30pm)