The PaTH Network prides itself on being patient-centered, requiring dedicated time and staff for patient engagement. Luckily, we have a fantastic outreach team, including Crystal Evans, Community Relations Coordinator for the Institute for Clinical and Translational Research (ICTR) at the Johns Hopkins School of Medicine. Crystal has over twenty years of experience in patient engagement but, as she often emphasizes, she has been impacted by engagement as a patient her entire life. We asked Crystal about her experiences on both sides of healthcare.

How have you been involved in your PaTH Network site?

I joined the PaTH Network in the summer of 2022, and I serve as the Patient and Stakeholder Engagement Coordinator. Within my role, I help guide projects to integrate patient and stakeholder engagement in the research process. I also serve as a study coordinator for the PREVENTABLE project, and I’m a member of the PCORnet® Engagement Committee.

Why were you initially interested in this field?

I’ve worked in community engagement for twenty years, and my interest started when I was nine years old. After my father had a stroke, I became his caregiver. When I was sixteen, I remember sitting in the doctor’s office with my father when he was diagnosed with dementia. At the time, the doctor talked to my father and totally ignored me as his caregiver.

My father didn’t know what the word dementia meant and was unable to speak, but even when I mentioned this to his doctor, I still felt unheard. I decided then that no family should be treated this way.

That’s why I’m invested in Alzheimer’s Disease. I worked at Johns Hopkins’ Alzheimer’s Disease Research Center for eleven years, and I helped build their outreach program. Then, I joined the ICTR, and I’ve served as a lead on community and stakeholder engagement since its formation.

Why is engagement important to researchers as well as patients and community members?

We must work together to find ways to improve the health and quality of life within our communities. Both perspectives are important. I enjoy serving on the PCORnet® Engagement Committee because we are an inclusive group that works together to develop research approaches that benefit and are relevant to all communities.

Why did you want to work with the PaTH Network?

I enjoy working with the PaTH Network. It is a great way to connect with patients, community members, organizations, and academic institutions who are focused on being patient-centered.

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