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Have you ever wondered whether your experience navigating a diagnosis or caring for a loved one could make a lasting impact on the lives of others?
At Mayo Clinic, individuals who share their experiences as patients, caregivers, or community members to help inform research are known as Community Experts. Through Community Engagement (CE) Studios, Community Experts provide feedback that helps researchers design studies and healthcare solutions that are more relevant and responsive to real-world needs.
No research background is necessary. As a Community Expert, your lived experience is the expertise researchers are looking for.
Meet Community Expert Psalms Frye
Rochester resident, birth doula, and mother of six Psalms Frye recently participated in a CE Studio focused on artificial intelligence (AI) in healthcare.
As AI becomes increasingly integrated into healthcare, Psalms wanted to ensure community voices were included in conversations about how these technologies are developed and used.
"I think that is the trajectory our society is headed toward in most fields of operation," Psalms said. "I want to help make its usage impactful for all people's needs." 
During the CE Studio, Psalms joined a discussion with researchers and other community members, sharing perspectives that could help shape future healthcare technologies.
"It was rewarding to share my lived experience with researchers who are working on finding ways to better serve our community by utilizing advanced technology," she said.
For Psalms, participating was an opportunity to help researchers better understand the needs of the people who will ultimately use these technologies.
"We are the people receiving the care," she said. "We know what our needs are. Our input should help researchers and engineers figure out how those needs can be met."
Psalms believes sharing her experiences helped researchers better understand community needs and hopes to continue contributing through future CE Studios.
"I really enjoy participating," she said. "I would love more opportunities in the future."
What to Expect as a Community Expert
Community Experts participate in virtual CE Studios where researchers gather feedback in a small-group setting. Participants are invited to share their experiences, ideas, and perspectives to help inform health research.
As a Community Expert, you can expect to:
- Join virtual meetings with researchers and other Community Experts.
- Accept or decline invitations to participate in CE Studios.
- Help researchers better understand community needs and perspectives.
- Have personal identifying information removed to help protect your privacy.
- Receive compensation for participating in each meeting.
Become a Community Expert
If you are 18 years or older and have experience navigating a health condition or caring for a loved one, you may be eligible to participate in Community Engagement Studios.
No research experience is required. Your lived experience can help researchers better understand the people and communities they serve.
Ready to get involved? Register to become a Community Expert.
Questions? Contact the Community Engagement Studio team at mayocestudio@mayo.edu.
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FYI, the questionnaire includes one question that makes you select something even when nothing applies. I ended up selecting Other and entering N/A
Question:
Do you have experience or expertise in the following areas? (Select all that apply.)
Research, Healthcare, and Community Topics , etc...
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8 Reactions@roch Thanks for the feedback! I'll be sure to let the CE Studios team know.
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3 Reactions@roch Is it required to be a resident of Rochester, MN to participate?
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2 ReactionsHey @naturegirl5! Community Engagement Studios is a national effort available to Mayo Clinic patients and non-Mayo Clinic patients.
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4 Reactions@roch Hello, DJD83 here: I share the same observation: that my condition of bladder cancer was not cited in any of the choice categories. Not even a blank for insertion of bladder cancer. Based on my experiences, research and knowledge, this is a major concern for men especially. Contacts within the Louisville metro area, exposed the dire need for education and advocate-supported guidance for patients and their families. That's a topic I would love to pursue as a contributor to the CE group. Thanks for this opportunity. @djd83
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1 ReactionHi, @djd83. Thanks for the feedback. You're correct, we're currently not recruiting for Community Experts with bladder cancer, but I've passed your feedback on to the CE Studios team for future consideration.
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1 Reaction@roch
So did I.
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1 Reaction@jasminesouers As someone whose life has been turned upside down by autoimmune disease, I was dismayed to see it left out of most/all of the questions. The incidence of autoimmune diseases has skyrocketed upward, but doctors and treatments have remained flat. So much research needs to be done in recognition, diagnosis and treatment of known and unknown diseases. Patients need to feel that diagnosis and treatment are available where they live and not only in large medical centers at a distance.
I hope that autoimmune disease ( AD) will get the recognition it, and the patients, deserve.
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2 Reactions@becsbuddy I agree. Long COVID was not on it either, which I believe to be an autoimmune illness and the reason I joined this community.
I feel like when I hit submit that it didn't go through for some reason is there a way to confirm that you got my answers and survey?