As program director for the Colorado Cancer Screening Program (CCSP) at the University of Colorado Cancer Center, Andrea (Andi) Dwyer has long advocated for patient navigators — specially trained health workers who offer individualized assistance to patients, families, and caregivers negatively affected by health disparities to facilitate timely access to quality health and psychosocial care — as part of cancer treatment in medically underserved populations.
“Patient navigation is one of the few interventions that has proven to be effective in increasing access to and completion of cancer screenings and treatment in populations adversely affected by health care disparities, including racial and ethnic minority populations, immigrant and refugee populations, low-income populations, and underserved rural populations,” says Dwyer, chair of the American Cancer Society’s National Navigation Roundtable.
Dwyer has helped many community clinics and health care organizations across the U.S. put navigation programs in place, but as time has gone by, she has come to realize that equal to the challenge of getting a navigation program off the ground is making sure such programs have the means, strategies, and resources to become sustainable.
“When you apply for grants, everybody wants to know about your sustainability plan,” Dwyer says. “But sustainability, especially for medically underserved communities, can be difficult. Particularly, for individuals who don’t have insurance. There aren’t pots of money from legislators or federal or state entities. When it comes to sustainability planning, nobody gives you the tools or talks about how you’re going to do it. People mostly talk about cost, but as I thought about it, I realized cost to support navigation is a portion of the issue, but sustainability is more than just paying for the intervention. It must be supported.”
Looking to develop a sustainability model for patient navigation programs, Dwyer with her colleagues, including Betsy Risendal, PhD, a professor in the Colorado School of Public Health, in 2018 began researching similar programs in other disciplines. They came across the Program Sustainability Assessment Tool (PSAT) developed by the Center for Public Health Systems Science at Washington University (WashU) in St. Louis, which she thought could be adapted to evaluate the sustainability of patient navigation programs.
“We liked it because it talked about financial reimbursement, but it also talked about this matrix of support — if you’re going to have a program in the community and have it supported, what do you need to do to achieve sustainability?” she says. “I called them and said, ‘I love your PSAT tool, and I’d like to adapt your model to talk about navigation and programs that support navigation and figure out how this model could speak to it more holistically.’”
With WashU’s blessing and assistance, Dwyer and the CCSP team began work on what became the PNSAT — patient navigation sustainability and assessment tool. Offered through CCSP, the resource offers questions and scoring in areas such as engaged staff and leadership, organizational context and capacity, and funding stability to help organizations figure out where they need to focus most to keep their programs up and running.
“We’re talking about sustainability in a way that’s not abstract,” Dwyer says. “Prior to the PNSAT, people didn’t have an instrument that gave them a score. They didn’t have dedicated time and space to talk about it as a group and really think about how to do that work. It’s a conversation starter.”
Dwyer says the tool has been embraced by national organizations such as the National Navigation Roundtable of the American Cancer Society and the Academy of Oncology Nurse Navigators, who employ teams to support navigators and organizations to develop strategies to increase areas such as engaged leadership, which she says is vital to long-term success.
“I see clinic CEOs all the time who don’t know a lot about community health work and navigation, because they aren’t close to it,” she says. “They're usually the ones who decide what stays and what goes or how much something is supported. It’s important to have those individuals around the table to see how navigation impacts their patient population, how it impacts the bottom line, how it impacts the workload for doctors and nurses. If you don’t have them involved in that discussion about the impact or the value, they can’t be true advocates or champions for the intervention.”
With the PNSAT now in use by many clinics and organizations, Dwyer and the CCSP team, which includes Risendal, Elsa Staples and Joanna Henning, are interested to see how the tool changes the conversation around sustainability. Dwyer sees its value not only in developing sustainability strategies, but in organizations being able to achieve better and wider funding because they have such programs in place.
“For a workforce dedicated to medically underserved communities, we’re now using models to talk about sustainability and how to support these folks in a dedicated way,” she says. “Not only do we have data for the programs and clinics we work with in Colorado, but I’m starting to see national organizations embrace this idea. Now we can talk about how to really support the workforce moving forward.”