Oncology Research Nurses at NCCC
It’s the best job at the hospital! We balance primary nursing care with looking at the bigger picture, improving treatment options and cancer care long term, and being able to provide treatment choices to our patients that are not offered otherwise.Maureen Stannard, BA, BS, RN
The oncology research nurses at Norris Cotton Cancer Center (NCCC) are vital to the success of the Cancer Center and of oncology research as a whole. They play a unique role in providing excellent hands-on patient care, and understanding the research that supports the clinical trials in which their patients are involved.
The responsibilities of a research nurse are quite complex. They help to ensure that a trial runs smoothly, that approved protocol is being strictly followed and, most importantly, that their patients are monitored closely and kept safe at all times. On a daily basis they are on the forefront of personally screening and enrolling eligible participants in clinical trials that are available at the Cancer Center.
Helping patients find a clinical trial
There can be 80 to 400 pages of criteria in a protocol, including extensive details about required appointments and drugs that need to be considered. One of ten research nurses (see below for brief profile of each) will discuss patients’ eligibility with the physician overseeing the trial. If a patient qualifies, the physicians explain to the patient the medical background and reason for the study. The research nurse then leads the patient through a thorough informed consent process, which includes laying out the commitment and expectations of the study from the patient side and providing guidance through the enrollment process.
“I tell them it’s like a recipe,” says Sara Metzler, BSN, RN. “You have to follow step 1 to get to step 2. Do you want to be guided by this ‘cookbook’ or would you prefer to keep a more open schedule and not enroll in trial?” With this information, participants are able to make an informed decision, and are more comfortable knowing what to expect once they provide consent and begin taking an active role in their own care. “I like being able to offer something different, to give hope” says Stephanie Miller, BSN, RN, and adds, “Participants feel they can provide something meaningful and be an active participant instead of a ‘victim’ or ‘patient’.”
Building a one-on-one relationship
Once enrolled, the research nurses build long-lasting and valued one-on-one relationships with their patients, which are crucial to the patients’ experience and wellbeing. “It’s an honor to be part of a patient’s care, and be the person they can call for help” says Katie Carpenter, MSN, RN. Adds Pamela Wider, BDN, RN, “One thing I have found over the last 12 years working in the infusion area is that you may give the patient their treatment for that particular day and may never cross their path again, not knowing how they were doing. The ‘not knowing’ was always the hard part for me. So now, in the research nurse role, I’m able to follow the patient through more of their journey and help them through these difficult times, which has been great.”
As a bedside nurse, you don’t get as into the backstory—there’s no chance to get into the cellular level of why we do what we do.Marylynne Strachan, BSN, RN
The research nurses serve not only as a qualified clinical provider, but as an advocate, and in the patients’ eyes, as a protector, a teacher, a support system and a confidante. “Understand that I have full confidence and respect for my doctor,” says a patient of Jami Wilson, ADN, RN, “but getting to meet and work with Jami has made the whole tough journey more bearable. She's amazing, smart, knowledgeable, warm and she gets me. There is no better feeling than knowing she's got my back.” Kimberly Sleeper, BSN, RN, who focuses exclusively on pediatric oncology also emphasizes the importance of knowing her patients on a deeper and more long-term level: “Many of my favorite moments have been patients returning to visit years and years following the completion of their therapy. These moments always make me smile.”
Versatility is key
In addition to supporting patients throughout the research studies, research nurses are the vital link between the patient and the lead physician, researchers, coordinators, pharmaceutical representatives, members of the multidisciplinary research study team, and sometimes other medical centers and universities. Cory Howarth RN, OCN, nurse manager for Clinic, Research and Blood and Marrow Transplant recognizes the versatility required of the research nurses. “They must work independently and as part of the collaborative care team. They triage symptom management and make decisions about patient care.” Joni Spring, DNPc, MS, RN, director of Cancer Nursing Operations fittingly summarizes research nurses having “high-tech and high-touch intellectual curiosity, compassion and knowledge.”
Working as a collaborative team
Research nurses work closely with each other as a team to present challenges, share ideas and ask questions, and they care for each other and respect each other’s knowledgeable advice and recommendations. Metzler notes that NCCC has a unique and imperative teamwork setting, which she has not found elsewhere. Having solid, trustworthy, give-and-take relationships with physicians, nurse practitioners, pharmacists and clinic nurses, in addition to the coordinators and regulatory specialists who provide the support the nurses need to do their jobs is very important.
Research nurses are critically important members of our clinical trials teams. They provide the human connection between the patient and the study while ensuring that clinical research is conducted smoothly and efficiently.Konstantin Dragnev, MD
Understanding and following trial protocols
In their role, research nurses must be methodical and technically savvy to collect and maintain accurate, complete data, and highly detail-oriented to ensure the specifics of the study protocols are being strictly followed. Patient safety and wellbeing is always of first and foremost importance. “In order to provide patient and family education, and to coordinate the care of these very complicated patients, it’s imperative to be knowledgeable about the treatment protocols and the medications, supportive care, diagnostic and surveillance evaluations and adverse events that are associated with the studies,” Sleeper says.
Some protocols may have been written by pharmaceutical companies or other universities and hospitals running trials that NCCC is taking part in. Some are cooperative group protocols written by a selected group of physicians across the country to answer a specific question. About 25 percent are “D- Studies,” which have been written by an NCCC researcher who has drafted the study, applied for funding and taken the lead in getting the study off the ground. “A study could be a change in the way radiation is given, or a drug with different side effects. Some studies are quality-of-life-oriented, some are treatment oriented, but each has a specific end point,” Nancy Kennedy, ADN, RN, points out. Research nurses must be able to read and thoroughly understand all of these forms of protocols. “We have to have an elevated appreciation for integrity of data, which is what sets us apart,” says Maureen Stannard, BA, BS, RN. “It has been a bigger challenge than I had thought” notes Wider. “The learning curve has been huge, almost like learning a whole new language. It is very different with all the regulatory aspects of research studies in comparison to standard of care.” Adds Spring, “Their critical thinking of the research is unique to an academic medical center.”
Challenges of the role
Time management is a challenge in this position, as research nurses don’t have their days scheduled out for them. Even if there are only two or three patient visits on a given day, they are still fielding phone calls and other interruptions and have to be able to drop everything when emergencies arise and priorities change. Even in a standard enrollment process, Kennedy explains it’s “finding the balance of what is right for each patient considering provider schedule plus chemotherapy schedule plus radiation schedule plus MRI and other scans; we’re very involved in the setup of schedules.” Other challenges and frustrations include not having desired immediate results—it can take years to follow and compile data and receive FDA approval for an experimental drug. The act of transitioning patients from clinical trials back into clinical care is also difficult because the patients can feel as though they’ve lost that connection with “their” team.
Having dedicated research nurses available at the Cancer Center increases recruitment to clinical trials, which leads to additional funding for future research studies. Subsequently, we can further advancements in medicine in the form of new treatment options. “It’s an exciting time to be a research nurse. There are so many new drugs in trial that are more targeted or immunotherapeutic,” Carpenter says. “The science is intriguing,” Kennedy notes, and adds, “I find the challenge of learning continues even after being a nurse for 37 years. I’ve seen medicine and nursing evolve.” Trials of these drugs and treatment options will improve standards of care and, ultimately, lead to higher rates of survival.
Being a clinical research nurse in Oncology requires a special personality. NCCC’s ten research nurses have a versatile mix of backgrounds, each with specific skills and areas of expertise. What they all have in common are years of experience and a strong nursing foundation, and possess the compassionate, caring, yet scientifically minded and adept personality that this interesting but challenging role requires.
Katie Carpenter, MSN, RN, became a Clinical Research Nurse six years ago after working inpatient oncology in Syracuse for a couple years. She knew that she wanted to work in oncology from a young age, after having family members and friends diagnosed with cancer. Katie’s niche is in Thoracic Oncology, which includes lung and esophageal cancer.
Brian Highhouse, BSN, RN, never actually intended to end up in Oncology. But once he did, he found himself hooked. In October 2016, he celebrated 27 years as a Hematology/Oncology nurse. His focus is on phase 1 (early phase) human trials and new drug development.
Nancy Kennedy, ADN, RN, knew young in her 37-year career that she wanted to move to Oncology to honor her mother who had cancer. She works in radiation-based trials and also focuses on Neurooncology (brain tumors), wanting to give her patients longer disease-free time with their families.
Sara Metzler, BSN, RN, began as an intern and then staff nurse at Mayo Clinic. Through a series of life events and personal discoveries, Metzler came to NCCC six years ago where she found the fulfilling level of patient care that she was looking for.
Stephanie Miller, BSN, RN, also lost her mother to cancer, transitioned from being a research nurse for cystic fibrosis patients to the Epidemiology program at Geisel, and is now stepping back into active clinical trials with patients in Oncology. She also serves as the region coordinator for the Cancer Center and will work with southern regions to improve availability.
Kimberly Sleeper, BSN, RN, has been caring for children with cancer since she was a new graduate nurse. With experience in pediatric neurology and general pediatrics, she found herself gravitating toward oncology patients. She served as a pediatric oncology nurse at NCCC for over 15 years before seamlessly transiting into the research role eight years ago. She now combines Pediatric Oncology research nursing with her role as a Pediatric Hematology/Oncology nurse coordinator.
Maureen Stannard, BA, BS, RN, came to NCCC with a full background, including GI studies, neurology, working with stroke patients, conducting clinical research on Alzheimer’s, cancer center research and clinical oncology. As a research nurse, she is able to have the level of connection with patients that she desires. Currently she is writing her own study on the side effects and outside perception of patients who receive oral treatments for all types of cancers.
Marylynne Strachan, BSN, RN, spent many years as a nurse in Pediatric Oncology and in the Birthing Pavilion before realizing how much she missed oncology. Knowing how quickly things change in cancer care, particularly in pharmaceutical treatment, and wanting to remain in the forefront of change, research nursing became of interest to her.
Pamela Wider, BSN, RN, has held a variety of roles in her 30-year nursing career. One of her first jobs out of nursing school was on a general medical-surgical floor that also did inpatient chemotherapy. She always had a desire and plan to return to Oncology, and decided recently to challenge herself by pursuing research nursing. She is currently working with hematology, phase 1, urology and melanoma studies.
Jami Wilson, ADN, RN, spentnine years as a nurse in Concord, six of those in Inpatient Medical Specialties and Oncology. Wanting experience in both oncology and research, having had an aunt with breast cancer, and hearing from a trusted colleague how great it was to be a research nurse, Wilson knew immediately that this was what she should be doing. She has been with breast team for four years and is now a lead research nurse of the group.