Going the Extra Mile to Build Trust

Betsy Adams, RN, says flexibility is the key to rolling with the many twists and turns her average day takes as she manages the AIDS Clinical Trials Group (ACTG) Network’s Clinical Research Site at Boston Medical Center (BMC).

“You can plan your day out, but it will never go that way,” she says with a laugh. “But that’s also what I love because no day is ever the same.”

One recent example, a patient who had been on an ACTG study several years ago called Adams to talk about his experience witnessing the Boston Marathon bombings. The call lasted nearly an hour and Adams was happy to stay on the line.

“We serve a large minority population at BMC and many of our patients have been or are homeless or substance abusers,” Adams says. “Trusting someone else is hard for them and we do extra things to build that trust. I tell my patients to call or drop-in any time, not only when they have an appointment. We screen a lot of patients for studies and not all of them can enter, but they can still call and talk to me. I am here for them 24/7.”

It’s this accessibility that Adams says she associates with the call to be a nurse.

“The ACTG is such a nurse-driven research network,” Adams says. “HIV care is incredibly interesting and also medically complicated. It really is a nurse-oriented field because patients need so much TLC (tender loving care) and education. We interact with patients during each study visit, checking their labs and taking care of any other patient care issues they may have. I have been at the ACTG’s BMC site for 12 years so I have developed long term relationships caring for many of our patients here.”

Charlene Gaca, RN, BSN, worked with Adams for a year at New England Medical Center before they both came to the ACTG’s site at BMC. Colleagues for 13 years now and the only two study nurses at the site, Gaca says she and Adams have a great working relationship and friendship.

“Working with Betsy has been a wonderful experience,” says Gaca. “We work well together.”

For Adams, the calling to be an HIV study nurse grew out of her love of biology and caring for people.

“I majored in biology in college and then took a part time position in a lab,” she says. “But I missed interacting with people.”

Her experience with HIV began when Adams took a position as a medical assistant at Planned Parenthood in New Haven, Connecticut, in the 1980s, and lost a colleague to the virus before testing was available. She was also struck by the fact that health insurance companies treated a positive HIV diagnosis as a pre-existing condition that would not be covered when people identified themselves as an IV drug user or a sex worker. These two incidents solidified her passion for community health and motivated her to pursue a second bachelor’s degree in nursing.

“This is why I love clinical research because it combines my love of science and caring for people,” Adams says.

As the coordinator for the ACTG’s clinical trials unit at BMC, Adams splits her time seeing patients on study and managing the research site. She credits her colleagues for helping the site run smoothly, especially Gaca as well as Alison Coe, MA, Data Manager and Regulatory Coordinator, and Allison Schmale, MPH, Research Assistant and Study Recruiter.

“Our researchers here, like Drs. Ben Linas and Ioana Bica, are wonderful, too,” says Adams. “I actually used to work with Dr. Bica when she was a resident at New England Medical Center. She, Charlene and I now all work together again at BMC, so that is nice. I think working in community health is a special calling and you will work again with same people if you stay in this field.”

Adams and Gaca currently follow between 50 – 60 patients. Nine studies are currently underway at BMC including A5294, which tests new medications for people living with HIV and hepatitis C virus (HCV) with the hope of eradicating the HCV.

“Forty percent of our patients at BMC are living with the HIV-HCV co-infection,” Adams says. “We see a lot of patients with cirrhosis here who are waiting for treatment. We study their lab values, educate them and hold their hands. This co-infection is tough on them. It is exciting to think that we may actually cure their HCV.”

Looking to the future of the ACTG’s research agenda with her patients in mind, Adams says HIV and aging is a real concern.

“Our patients are getting older and none of us know exactly what lies ahead,” Adams says. “But I think exploring studies on HIV and aging is an area the ACTG will excel in.”

Boston Medical Center is one of five ACTG sites that make up the Partners/Harvard AIDS Clinical Trials Unit in the Boston, Massachusetts and Providence, Rhode Island area. Adams enjoys having her research nursing counterparts nearby to consult with at Massachusetts General Hospital, Beth Israel Deaconess Medical Center, Brigham and Women’s Hospital and The Miriam Hospital/Brown University.

“I think of my job as CTU Coordinator as a problem-solver, but I couldn’t do it without the support of my co-workers including all the wonderful and smart nurses at all the sites within the Harvard/BMC/Brown Clinical Research Unit. It’s great to be able to pick up the phone and get assistance or help from them,” says Adams. "I think everyone who works in HIV in general is very nice, but the nurses in this field are especially amazing. Being in research is exciting, especially when you are part of a study that changes treatment guidelines. The mix of experienced and younger nurses at the ACTG’s five sites in the Boston-area is great because you are always learning. I love learning and taking new ideas to see if they will change the way we care for our patients. And I truly love my patients at BMC.”