26 June 2025
At INHSU, we believe research is stronger and more impactful when the voices of people with lived and living experience are front and centre—especially when the work is focused on people who use drugs. But what does meaningful involvement of people who use drugs in research actually mean?
We spoke with Joanna Cooper, Project Program Coordinator at Oregon Health & Science University and former Program Coordinator at HIV Alliance. Joanna brings years of experience in peer support, harm reduction, and research coordination across Oregon, bringing the valuable voice and expertise of someone with lived experience of drug use.
In this Q&A, Joanna shares her experience of working on the Peer-Assisted Telemedicine study (TeleHep C) in rural Oregon, which we recently featured as a research capsule summary (download here). The study was selected for its innovative, peer-led approach to expanding hepatitis C treatment access in underserved communities in rural areas.
We discuss what drew her to the work, what real community engagement looks like, and why trust, not titles, makes the biggest difference.
Tell us about the Peer-Assisted Telemedicine study (TeleHep C), and your role in the study
The TeleHep C study was designed to help people who use drugs—especially in rural or hard-to-reach areas—get treated for hepatitis C through a peer-assisted telemedicine model. My role was to do direct outreach in the community, mostly in homeless camps, testing people for hep C and walking them through the steps to get treated.
I helped build trust, followed up with participants, and made sure they felt supported the whole way through. I also trained other peers on how to talk about hepatitis C, harm reduction, and infectious disease in a way that meets people where they’re at.
As part of the role, I also liaised with the academic researchers on the project—keeping them updated on what was happening on the ground, giving feedback on what was working (or not), and helping make sure the research actually reflected what people in the community needed.
What made you want to be involved in the study?
It came out of frustration, to be honest. I’d been testing people for HIV, syphilis, and hepatitis C in various roles for years. For HIV and syphilis, we could get them treated straight away. But for hep C, we couldn’t.
What was your favourite part of working on the TeleHep C study?
My favourite part was being out in outreach—hitting the grounds, going into the homeless camps, and working directly with people. And then seeing the excitement when they cured their hepatitis C. They were so excited—some started making changes in their life, like getting back involved with their kids or getting jobs. It was amazing to see.
Is there a moment that really stuck with you during the project?
There was one participant who was off drugs for six months. She’d gone through all the steps, done her blood work, and was about to get her medication. But the doctor turned around and said, “Nope, I’m not prescribing it to you because you’re just going to reinfect yourself.”
She came in crying to me, and I was like, “Oh hell no, girl. We’re doing this.” That really pissed me off. From that point on, I just hit the field and started working hard. People who were actively using drugs wanted to get treated. They wanted to be cured.
What would make you want to get involved in another research project?
It has to make a real impact and do something that’s never been done before— like Oregon HOPE TeleHep C and the pilot Engagement study. They were kind of one-of-a-kind… something to make a direct impact and shake up the world a little bit. And also to tell doctors where to stick it!
What kind of role would you want to play in future research?
Pretty much what I do now—peer education. Going direct to peers, but also training other peers on how to talk about sexual health, infectious disease, etc. I share what works for me and it’s a lot of fun too.
What does meaningful community engagement look like to you?
To me, it’s when my clients call and say, “Hey Joe, I need your help,” or “Hey Joe, this is what I did today.” That kind of connection means a lot to me—it shows trust. Real engagement is about meeting people where they’re at. If they don’t want to stop using drugs, that’s okay. Let’s give them the tools to do it safely, and be there with resources to support whatever goals they have for themselves.
What kind of recognition or support feels fair for peers in research?
Being listed on papers is great, and presenting at conferences is nice—but what really matters is being trusted. I loved working with Doctor Todd Korthuis, who trusted me and didn’t micromanage me. Just gave me a gentle guide when needed. Trust your peers and they’ll do what needs to be done.
What’s one thing researchers could do differently to build better relationships with the community?
At the beginning, drop the academic stuff. Sit down, have lunch together, and get to know community members as people, and vice versa. I think that’s really important.
What makes you feel respected and valued in a research team?
When my insights are actually considered—brought to the table and discussed. Respect and value what a peer says. But on the grander side of things, it’s about knowing I’m doing something that matters.
Can you tell us a little about your background and experience with research?
I don’t come from a research background—aside from doing a capstone project for my bachelor’s degree. But when I started implementing programs like the TeleHep C study, I realised how much I loved the work. I was drawn in by the connection with study participants, especially through community-based outreach. Building trust with people and seeing the difference it makes — that’s what I enjoy.
