After surviving breast cancer and graduating with a Clinical Nurse Leader degree, Patricia Bellohusen’s skill set didn’t quite fit in any traditional mold. But her determination and forward-thinking approach led her to a new calling at Wilmot Cancer Institute’s Survivorship Program.

When Patricia “Patty” Bellohusen enrolled in the Clinical Nurse Leader program at the University of Rochester School of Nursing, she wasn’t sure what path her career would take. After 20 years in nursing, she knew she wanted to do something to address patient satisfaction and outcomes.

“I’m the kind of person who wants to be on a team, but the nurse practitioner role never felt like the right route for me. So, I started taking classes in the Clinical Nurse Leader program. Then my whole life changed."

While working part-time with oral and maxillofacial surgery for the University of Rochester Medical Center (URMC) and taking classes, Patty was diagnosed with breast cancer. As a nurse and now a patient, she started compiling a list of what was important to her and the patients she met throughout her journey.

“I thought I understood the patient experience before, but when you’re a patient it’s totally different. I started to think about how tiny little things could be changed — such as providing enough chairs for patients waiting for an infusion – to make it so much better for the patient.”

Envisioning the Potential of a CNL

With her CNL degree and experience, Patty thought she could be the one to lead these changes. But finding a job where she could use her skills to improve care for cancer patients was a little tricky.

“Graduates may not find positions that specifically require CNL preparation and certification, so you have to be creative. The first step is to think about what you want to do and look for opportunities where you can apply the CNL skill set and competencies,” she said.

Patty’s persistence and networking paid off when she found a position as the enhanced recovery program coordinator for the Department of Surgery at URMC. It was the job she was prepared to do as a CNL. It required her to take a step back and examine workflows to identify opportunities for working more efficiently and improve the quality of care and patient outcomes.

There, she connected with health care teams— from pre-op to intra-op to post-op – and helped to reduce the length of patients’ overall stay by three to four days.

“It was about being proactive. I met with patients and their caregivers post-op and collaborated with team members to implement new protocols. We used a lot of unique strategies to facilitate patients’ recovery, by educating and working with all the health care teams. It was really exciting.”

While Patty was happy to be utilizing her newfound skills as a collaborator and innovator, a year into the job she still felt she should be working for cancer patients.

“I said ‘I’m going to improve care for cancer patients. I want to improve the whole experience.’ I just kept talking to people and sharing ideas about what I wanted to do. I knew in my heart what my passion was and where I would make the biggest impact. That’s what’s so great about the CNL program. It empowers you to become a leader.”

When Patty saw a job posting for the Judy DiMarzo Cancer Survivorship Program coordinator at Wilmot Cancer Institute, she knew it would be a perfect fit.

“I said, ‘This job feels like me. This is what I went to school for.’ With this new position and my education I felt that, ‘Hey, I’m someone who deserves to be at the table. I bring something important. I bring something of value.’”

Understanding Data to Reach Cancer Survivors

Wilmot’s Survivorship Program addresses the challenges faced by millions of cancer survivors learning to live well after treatment. This includes physical and psychological effects of treatment, as well as improving quality of life through exercise, diet, and connecting with support groups and resources in the community.

When Patty came on board in April 2017, she and the rest of the team were tasked with providing survivorship care planning to 50 percent of eligible patients by the end of the year in order to meet accreditation standards. At the time, they had only reached 7 percent of eligible patients.

The team – including Director Louis S. Constine, MD; Data Analyst Nancy Termer, RN, BSN; and Program Administrator Susan Fritsch – began digging into data to find ways to efficiently and effectively identify and schedule patients for survivorship visits.

To meet their goal, in July the team brought on full-time data analyst Nancy Termer, RN, BSN, who had transitioned from the program coordinator position. Termer began to help the team identify survivors using the OncoLog Cancer Registry and Electronic Medical Record. She then provided a detailed summary of eligible patients and service lines so Patty could work directly with the clinical providers to assist them in conducting the survivorship visit.

“This helps the health care team prioritize those patients and their needs that can be overlooked in the day to day operations of taking care of cancer patients during the treatment phase,” Termer said. “Before this systematic approach, patients were being lost in the world of being a survivor.”

By August, the number of patients who received survivor program visits jumped to 12 percent.

Meeting Survivors on Their Journey

Data show that when a provider meets with patients to talk about how to survive and thrive after cancer is important, too.

“We want to be sure we’re connected with patients at a time that’s been demonstrated as most beneficial to them,” Patty says. “We teach them that they are survivors from day one. We start to reach out once they transition from active treatment – could be chemo or radiation – to less frequent visits or surveillance.”

These survivorship visits – usually conducted by the patient’s oncology team – happen about three to six months after treatment when side effects have lessened or disappeared. And, the patient may be more mentally and physically ready to take on an exercise or nutrition program offered.

“As they finish treatment it’s a good time to relook at life,” Patty says. “It’s a new normal and it’s different for everyone – the patient, family, or spouse. It can be scary. For me, it’s a lot of learning, listening to their needs and concerns, and educating them to make sure they are aware of evidence-based ways to improve their quality of life.”

From yoga to mental health counseling to support groups for patients or caregivers, Patty must constantly keep apprised of what’s available in the community. She educates staff about the resources as they change and expand to be sure everyone’s aware of the benefits for patients.

Collaborating to Reach Requirements

Collaboration was also critical when it came to meeting the 50 percent requirement for survivorship visits.

“It was a lot of meet and greet to understand where different providers are coming from, validating their concerns, and trying to figure out how to work together. We needed to increase our survivorship visits to meet our requirements, yes, but also to provide better care.”

Patty credits her School of Nursing education – learning how to present ideas to leadership and communicating to different audiences, for example – with her success in this area.

“Some meetings have 30 to 50 people from diverse backgrounds. So you need to be sure everyone knows what you’re talking about and you may only have 10 minutes on the agenda,” she said. “One of the biggest things I learned was about those connections and collaborations with people, and networking. I learned to deliver an elevator pitch.”

Tobie Olsan, PhD, RN, CNL, FNAP, specialty director for the CNL program, says "Patty’s strength is that she has integrated the CNL skill set into her approach to assessing systems and listening to key stakeholders. She is bridging the gap and making those connections. It is the key to improving performance.”

By October, visits almost doubled to 25 percent.

Patty and the survivorship team continue to monitor participation monthly to discuss where to concentrate efforts and address any barriers that the outpatient health care teams may encounter when conducting survivorship visits.

They also consult with a Survivorship Advisory Council which consists of a diverse group of survivors, patients, social workers, physicians, residents, and nurses, among others to gain better insight into the needs of survivors, and how best to serve them.

“From there, we all might study an area that’s doing very well and learn about the different processes and workflows so we can disseminate ideas into other areas,” Patty said.

Looking Ahead

By year’s end, thanks to tireless team collaboration, 46 percent of eligible survivors received visits, just under their 50 percent goal. But, the work continues. One population that needs attention – which became clear after studying the data – was survivors of prostate cancer.

“Patients with prostate cancer can face many long-term effects that are quite profound including sexual or bladder dysfunction. We realized how many patients with prostate cancer were out there and what their concerns were,” Patty said.

The team also used their findings to add a new position, bringing on Deanna Drexler, RN, as Genitourinary Nurse Navigator. Drexler, a student in the Master’s in Nursing Education program, began her position a few months ago to educate urology patients – and the prostate cancer population – on healthy lifestyles and side effects of cancer treatment.

“My collaboration with Patty, Nancy, and the survivorship team is crucial. Being on the urology service, I have the highest volume of patients to guide through survivorship. Patty and Nancy are always helping me track which patients I need to reach out to and when,” Drexler said.

When it comes to her CNL role as a leader, Patty says most people need to find their passion and vision but keep a keen eye on what’s happening in the health care systems locally.

“It’s a matter of understanding your goals and missions and how you want to better patient care. It was almost a year after I graduated until I found a job and it wasn’t specifically a CNL position. You have to chart your own path.”