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Table 3 Quotes supporting engagement approaches (CREATE)

From: Engaging people who use drugs in clinical research: integrating facilitated telemedicine for HCV into substance use treatment

Abbreviation/component

Supporting quotations

C—Culture of the community

I would say it’s definitely [useful to have] a team approach, especially in this setting. It’s built into the setting that you need to talk to, not only the counselor, but also clinic staff. Even security guards might be involved in some aspects of what’s going on with the study… the medical director, staff, dispensing nurses too. It takes that kind of team approach to manage difficult cases” (Case manager).

We are a community amongst ourselves. We talk to one another… Thank God you [research team] came up with something that could physically help us with one of the side effects we got from our lifestyle, and you saved some of our lives. That’s what it’s about… This is who we are” (Patient-participant).

R—Respect for patient-participants

“We’re using patient-centered [approaches] to meet them where they are and… [help] with dynamic goal setting. We do that and patients have responded positively. We’re reducing the stigma… We’re even changing terminology that we use when we talk to our patients… For each patient, recovery means different things, success means different things, so, we’re more accommodating” (Administrator).

E—Education regarding innovative treatment

There were so many stories about people [who took] interferon saying that they had such bad results from it and when the [modern HCV medications] came out, I said, ‘wow, this stuff came out in our lifetime.’ Nobody ever thought that something like this would come around in our lifetime… My whole body feels better… I hope this program continues so everybody can get the opportunity to be cured” (Patient-participant).

A—Advantage of integrated care

“Everybody that participated, from the doctors to the workers, I couldn't have asked for a better group. Always checking on you, wonderful group of people. [Case manager] and a few of the doctors always asking about me, and it felt great. Everybody was always concerned… It was wonderful. I still tell people to this day how excellent it was” (Patient-participant).

“Combining opioid addiction therapy while curing them of their hepatitis [means] you’re achieving two goals over the long term. By treating [those conditions], you could be preventing fibrosis or hepatocellular carcinoma” (Staff).

“What difference does it make as long as the information, and the treatment that he gives me, does the job? Whether he’s on the screen or whether he’s sitting in my lap, it doesn’t matter as long as he’s helping me, and my situation. The Tele… on the screen, that’s not even the issue here. The issue is that the medicine works, it’s fool-proof. Just listen to the message and get the medicine” (Patient-participant).

T—Trust building with staff and patient-participants

It took a while for me to be able to gain that trust which essentially involved [the patient] sitting outside of our company and having conversations whenever [I was] available. We also had a nurse practitioner here that had a lot of experience with her. So, with those opportunities building trust, it allowed us to convince her to continue taking the [HCV] medication” (Case manager).

[The site PI] came up with the idea that [staff] are going to give patients their medication. [OTP’s staff] trust you that much to take your medication on your own. I appreciated that… By them putting that trust in me to take it on my own, that made me even strive harder to keep on taking it. It meant a lot to me that someone really trusted me to take this medication on my own” (Patient-participant).

E—Endorsement of the intervention by staff and patient-participants

I think we’re all born with this innate attribute that lets us know when something is right, and when something is wrong. And the one thing about addicts is, when the good thing is out, we pass the word. And that’s what we did… we passed the word, and it was a good thing, that word that was passed. And it’s something that I hope continues for a while because there are others that still need this. It’s definitely the way to go” (Patient-participant).

  1. OTP opioid treatment program, HCV hepatitis C virus