Behind the Scenes: A Q&A with Amy Chesire

At her first job after college at a nursing hospital in southern California, about 25 years ago, Amy Chesire met a man named Ralph who had Huntington’s disease. It was the first time she’d ever heard of it, but it would be the beginning of a long career working with people with HD. Years later she was working as a social worker at the HD Center of Excellence in upstate Rochester, New York when she got a call from a nearby nursing home that was struggling to help an HD patient. They asked her to come train their staff and consult with the patient—who turned out to be the son of the man she’d met long ago in southern California. “That’s how it all started,” she says. “It was bittersweet.”

Now she is a full-time social worker focused on HD at the neurology department at the University of Rochester Medical Center, and also acts as a research coordinator for Enroll-HD and other studies.

Q: What do you do?

I see patients, do patient management—and a lot of crisis management. I help folks get on to benefits such as social security and disability or get into nursing homes. I run support groups, and do a fair amount of home visits with patients as they get later into the disease. I also do nursing home consultation and education. That’s probably 60 percent of my time.

The other 40 percent is more research driven. I’m a study coordinator for Enroll-HD, and for PREDICT-HD, which is now wrapping up. There’s a lot of paperwork involved—finance, contracts, regulatory. It’s a very different skill set than anything that has to do with social work. Overall, it’s a great mix.

Q: Isn’t it unusual for a social worker to be coordinating research studies?

Yes! There are benefits, as well as some limitations. It makes recruitment easier because there’s already a lot of trust in the relationship. But it also makes things tricky. Because I have a relationship with my study patients, I don’t want them feeling obligated to be in this study because I’m their social worker.

I always say: We need you at whatever level you can do. I hope people respond to that. If that’s being in the Enroll-HD study now, great. If that’s being a caregiver, great. If you’re not up for it right now, that’s fine too. The bottom line is we want you to be our patient here. If you want to be involved in research, great. We’d love to have you.

Q: How do you approach people about joining a study like Enroll-HD?

What I’ve found is that when people first get a positive result, it’s a prime time to get into research. It gives them a lifeline. They now know they have this gene and will show symptoms at some point. So they might want to stay involved at some level, but not at a big level. Something like Enroll-HD is ideal. It’s one visit a year, and that may be just about all they want to deal with. Patients see that as something that gives them some degree of hope, that they are really trying to do their part.

Q: Since there isn’t an immediate payoff to being involved in an observational study, what do you tell people about it?

The number one complaint my families have is that everything is moving too slowly, so that’s one of my big pushes around Enroll-HD. For example, with the blood draw: If people are agreeable to giving that extra blood, I tell them, look, if I’m a researcher sitting in a lab in London, and I need 100 samples from people who are gene-positive, it could take me years to find people who have the gene are agreeable to donating blood, and willing to come to my lab. Whereas through Enroll-HD, the researcher could go through a vetting process, and can immediately have what they need. I explain this to volunteers to bring it out of the grayness into stark reality: This is how you can get to move things along more quickly.

Q: How are the visits going?

I’ve been more mindful lately of how long a new visit can take. Especially for later-stage folks, you want to be mindful of people getting tired and frustrated. I have to watch to be less chatty! I know these people well, their families and kids.

Everybody has an exceptional attitude around here about HD. We try to keep it as upbeat as possible, with a lot of thank yous. Our patients probably get tired of hearing it! But we really do appreciate it.
This story was originally published in the Autumn 2014 issue of Enroll! Photo courtesy Amy Chesire.