A sunny Dallas day greeted attendees Saturday as they gathered for the conference’s keynote address by former Second Lady of the United States Jill Biden, EdD. Praising navigators and sharing her personal experiences with cancer, as well as insights as Co-Founder of the Biden Cancer Initiative, Dr Biden garnered a standing ovation from the packed house. A full day of informative sessions, along with the interactive Leadership Live Town Hall, culminated in a dazzling evening at the Denim & Diamonds Awards Event.
Dr Jill Biden Stresses ‘The Urgency of Now’ in Impassioned Keynote Address
Perhaps no one knows the integral role of the navigator as well as those whose lives have been touched by cancer. Jill Biden, EdD, former Second Lady of the United States and Co-Founder of the Biden Cancer Initiative (BCI), is certainly no exception.
“When I think about people who are really changing lives, I think of people like you,” she said during a passionate keynote speech that captivated a full house of attendees. “On behalf of all patients, thank you. You may not know the difference you make in people’s lives, but it’s enormous.”
Several years ago, Dr Biden’s sister was diagnosed with lymphoma and required a stem-cell transplant. As is the case with any cancer diagnosis, it was a frightening and uncertain time for the family. Fortunately, they had help that proved indispensable and the cancer is now in remission.
“She had an advocate every step of the way—Shannon, her nurse navigator,” Dr Biden said. “She cared for her when she was weak. She made her laugh. She gave her the hope that she needed. This nurse navigator made all the difference—she made the triumphs more joyful and the tragedies more bearable.”
This was not Dr Biden’s only brush with cancer. Having lost a close friend to breast cancer and seeing 3 other friends through the disease as survivors, the lifelong educator became inspired to start the Biden Breast Health Initiative in 1993. The organization developed a breast health curriculum that it disseminated to high school girls throughout Dr Biden’s home state of Delaware, along with visiting every high school in the state.
After both of her parents died of cancer, Dr Biden also suffered the loss of her son Beau, who succumbed to brain cancer in 2015, at age 46. She talked about watching him struggle with the disease, and how much comfort his nurse brought to him, often singing to him at his bedside.
“They treated Beau and all of our family with so much kindness and so much dignity,” she said.
Founded in 2017, the BCI was a natural outcropping of the work of Dr Biden and her husband, 47th Vice President of the United States, Joe Biden, on then-President Barack Obama’s Cancer Moonshot, both efforts that remain close to their hearts because of their personal connection to the disease. According to Dr Biden, they did not initially plan to launch a new organization after leaving the White House.
“We both felt the moral imperative to step up,” she said.
Since then, the BCI has made it its mission to improve data standards, reduce disparities, provide greater access to clinical trials for all patients, and bridge the gaps between the various branches of the cancer community, among other worthy goals. Dr Biden pointed out that while the cancer death rate has fallen 25% since 1991, the research and care community still has much work to do.
“As you know, progress is uneven,” she said. “Poverty draws a line between surviving and succumbing to the disease.”
As part of the BCI’s efforts to foster collaboration, Dr Biden has spoken with patients, family members, doctors, nurses, navigators, and others who play a role along the care continuum. One theme that emerged was the power of navigation to impact outcomes in a positive way, which served as a catalyst for the Biden Patient Navigation Working Group, with AONN+ Chief Nursing Officer and Senior Director of Strategic Planning and Initiatives, Danelle Johnston, as its Chair. The group is striving to implement more effective patient navigation programs across the country, Dr Biden said.
“You see the need; you know how important you are to the patient’s journey,” she said. “With organizations like AONN+, we’re bridging the gaps.”
Dr Biden shared an anecdote she had heard from an oncology social worker, whose patient was doing well with a treatment, but was nonetheless losing weight. When the social worker questioned the patient, he confessed that his eating habits had suffered because his only cooking implement, a hot plate, had broken. By doing something as simple as purchasing a new hot plate for the patient, the social worker was able to have a profound impact on his outcome, illustrating every individual’s ability to contribute to the fight against cancer.
“If we’re going to beat this disease, we’re going to need innovation and creative solutions,” Dr Biden said.
She quoted a poem written as part of the Cancer Poetry Project by Nancy Louise Peterson, a patient. “I need to tell you. I learned both at the same time, that time is limited and it’s never too late.” Dr Biden said this quote rings true not just for patients, but for the movement as a whole.
“This is urgent, but it’s not too late,” she said. “Together we are stronger, we are fiercer, we are more powerful than this disease. We can say ‘Not one more mother; not one more son,’ if we start today.”
Moved with emotion as she closed her remarks, Dr Biden was met with a standing ovation from the hundreds of navigators in attendance.
Expert Insights Energize Attendees to Supercharge Their Navigation Programs
Although the value of navigation is unquestionable for those close to the field, seeking to launch and sustain an oncology navigation program involves demonstrating this value to cancer center administrators. A panel of experts comprised of oncology administrators shared insights about breaking down the barriers to developing, implementing, and sustaining a successful navigation program by garnering buy-in and providing evidence of return on investment (ROI). Truly providing an insider’s perspective on the diversity of oncology navigation programs and showing that one size does not fit all, each panel member offered details on their respective programs.
“You’re one of the most important parts of the cancer program,” panelist Crystal Dugger, MBA, RN, BSN, Assistant Vice President of Clinical Operations at Sarah Cannon, told the navigators in attendance. “Anybody couldn’t do this job. You do this job because you’re amazing.”
The session, titled “Supercharge Your Program,” provided a comprehensive road map for doing just that. Starting with a discussion of conducting a needs assessment as the first step in program development, the speakers went on to address the primary consideration in launching a program—funding.
“A lot of navigators are still funded through grants or funded through philanthropy, and that’s really not sustainable,” said AONN+ Co-Founder and Program Director Lillie D. Shockney, RN, BS, MAS, ONN-CG, who moderated the session.
Katherine Sharpe, MTS, Senior Vice President of Patient and Caregiver Support for the American Cancer Society (ACS), explained that for ACS Patient Navigators, ACS covers half the costs and the hospital covers the other half.
“That shared cost model is one that seems to work well for us,” she said.
Integral to securing the funding to not only start up, but also drive a navigation program toward success, is the demonstration of ROI. By instituting the AONN+ Standardized Evidence-Based Oncology Navigation Metrics, programs can equip themselves with concrete benchmarks by which to measure value and sustainability.
“I always say you cannot manage what you do not measure,” Ms Shockney said.
Ms Dugger agreed, saying the AONN+ metrics ease the difficulty involved in measuring a program’s value.
“Excel spreadsheets can be your best friend,” she said, adding that an institution’s IT team can offer a wealth of help with setting up these documents for collection of data.
Sloan Maes, MSN, RN, Oncology Service Line Director at Memorial Hospital - University of Colorado Health, said although her institution’s system for data collection and measurement isn’t quite as robust as Sarah Cannon’s, it is still a priority, and the AONN+ metrics have made it much more manageable. She encouraged those in attendance to choose from among them the ones that are most relevant to their own institutions.
Ms Sharpe said ACS has had a nonclinical patient navigation program since 2005 and added that data collection is a challenging task.
“I’m thrilled with what AONN+ has done in this space,” she said. “Look at what fits best for your facility and where you’re at.”
The panel noted the importance of securing a physician champion who understands the program’s true worth and can help in obtaining buy-in from executive leadership. Ms Dugger emphasized the crucial nature of touting the pivotal role of navigators to CEOs and other administrators.
“Keep all those cards and letters you get from patients,” she said. “They’re incredibly important.”
Ms Dugger also encouraged navigators to share with their colleagues and the profession as a whole when something works. Because of the relative newness of navigation in the big picture, she said, it’s important to learn from one another.
“The Journal of Oncology Navigation & Survivorship would love to publish your work,” she said. Attaining the level of administrative engagement and buy-in necessary to foster navigation programs is not a simple task, the speakers cautioned. A phenomenon termed “oncopolitics”—which essentially consists of competitive interests or power struggles in oncology care—is just one example of a potential hurdle navigators must clear in their efforts. Acknowledging that some people will simply never be supportive of navigation programs, Ms Maes said navigators shouldn’t spin their wheels trying to win over one of these individuals. Instead, seek out someone else who is open to understanding the value of a navigation program.
“And never walk into the room without data,” she added.
Breakout Session Topics Cover Various Areas of Interest for Navigators
Amid Saturday’s full roster of sessions and events, navigators got a chance to choose from among 4 areas of interest during the hour-long breakout sessions. Covering prehabilitation and rehabilitation, compassion fatigue and burnout, navigating cancer nutrition, and patient acuity as a possible 36th standardized metric, these smaller group sessions allowed navigators in attendance to explore the subject matter most relevant to their careers.
More and more, patient acuity is being examined as a tool for measuring care needs of individual patients to help determine staffing, budgets, per-patient costs, the provision of quality care, and other program considerations. For similar reasons, AONN+ leadership is assessing the possibility of adding acuity as the 36th national evidence-based navigation metric and working on the development of a navigation acuity tool to put the metric into practice.
“The reason we need a tool is that administrators are asking questions,” said Beth High, MSN, RN, OCN, CBCN, CN-BN, Clinical Leader at The University of Arizona Cancer Center. “Everyone wants to know, are we worth the money they pay us? We know we are, but we have to let them know.”
Diane Baldwin, RN, OCN, CBCN, Manager of Oncology Navigation Programs at the University of South Alabama Mitchell Cancer Institute and a member of the AONN+ Metrics Subcommittee, discussed the priorities in developing a navigation acuity tool, saying it must be far-reaching and must be kept simple.
Attendees had a keen interest in the discussion of acuity, as evidenced by the session being filled to capacity.
Stacye Mayo, MOT, OT/L, CLT-LANA, Senior Director of Clinical Operations for ReVital, a nationwide cancer rehabilitation program, shared an astounding story about her aunt, a 45-year cancer survivor. Most of Ms Mayo’s childhood memories of her involve her sitting, standing, and laying down with her arm held up in the air. It wasn’t until years later that Ms Mayo found out why. Suffering with lymphedema in the arm, the aunt consulted with her doctor about it. Holding the arm in the air was his recommendation for dealing with the swelling.
“We’ve made a lot of advances since then, but we haven’t made a lot of advances in sending patients to rehab,” Ms Mayo said.
Less than 2% of patients with cancer receive treatment for their physical impairments, resulting in significantly poorer outcomes, according to Ms Mayo, who presented on the topic of rehabilitation for patients with cancer along with Ashley Lightner, PT, DPT CLT, Program Director for ReVital. Highlighting the role of rehabilitation clinicians as part of the multidisciplinary oncology care team, the presenters discussed how rehabilitation promotes treatment compliance, increases patients’ ability to tolerate treatments, and decreases the risk for lapses in care, among other benefits.
The care provided by navigators often goes above and beyond the boundaries of what is given by other clinicians. Such prolonged exposure to suffering and concern for patients’ well-being often results in what is known as compassion fatigue, as well as burnout. AONN+ Conference Planning Committee member Emily Gentry, RN, BSN, OCN, Navigation Director for Sarah Cannon/Medical City Healthcare, discussed the effects of these phenomena on healthcare providers if left unaddressed, as well as ways to combat them through self-care and resilience.
“We all have times in our lives when we ebb and flow, but it’s that ability to come back that is important,” she said.
Emphasizing the importance of nutrition along the cancer continuum, Karen Godinez, RD, CSO, discussed the dietary needs of patients at the pretreatment, treatment—including needs specific to various treatment types—and survivorship stages along their cancer journeys. Sharing her knowledge as a registered dietitian who holds board certification in oncology nutrition, Ms Godinez also examined the treatment and supportive care required by patients with cancer experiencing malnutrition, anorexia, cachexia, and weight gain. Regarding malnutrition, Ms Godinez said 40% to 80% of patients with cancer are expected to experience malnutrition at some point in their treatment. She offered up some interventions to help these patients through it.
“Sometimes I just tell them, ‘Each time there’s a commercial when you’re watching TV, I want you to take a bite,’” she said.
Leadership Live Town Hall Event Connects Navigators Across the World
Navigators worldwide had a chance to engage with the AONN+ Leadership Council during the “Leadership Live” Town Hall event, which was broadcast on Facebook Live. A question-and-answer session at the close of the event allowed attendees and online viewers to pose their most burning navigation questions to the panel.
“Your voice is important to us, because you are representing your patients,” AONN+ Co-Founder and Program Director Lillie D. Shockney, RN, BS, MAS, ONN-CG, told the live and virtual attendees.
Members of the Leadership Council opened the much-anticipated session by discussing partnerships forged between AONN+ and other cancer care organizations, including National Healthcare System Alliance Partners, Midwest Cancer Alliance and Sarah Cannon, as well as National Alliance Partners, the American Cancer Society (ACS) and National Breast Cancer Foundation, Inc. In addition, The Ulman Foundation will join AONN+ as a National Alliance Partner in 2019.
Along with these valued partnerships, AONN+ is a participant in numerous national initiatives, such as the Biden Cancer Initiative, ACS National Navigation Roundtable, Commission on Cancer, Cancer Leadership Council, National Lung Cancer Roundtable, and Us Too, the International Prostate Cancer Education & Support Network.
Also currently underway is the National Evidence-Based Oncology Navigation Metrics: Multisite Exploratory Study to Demonstrate Value and Sustainability of Navigation Programs, with preliminary data rolling in from 8 study sites and more to come as the standardized metrics continue to be put into action.
Initial results from the AONN+ membership survey are also becoming available, revealing insights into the diverse group that comprises the Academy.
Not content to rest on its laurels, AONN+ has big plans for 2019 and beyond.
“We intend to, and will achieve, accreditation for our national navigation certification program,” said Ms Shockney.
Goals include achieving national accreditation for AONN+ certification; publishing results from the metrics study and developing a Metrics Implementation Toolkit in collaboration with ACS; and establishing an Acuity Initiative, involving the development, standardization, validation, and implementation of an evidence-based, navigation-specific Acuity Tool. Ms Shockney announced that Astellas will partner with AONN+ to bring this to fruition.
Other objectives are promoting collaboration across disciplines, increasing educational opportunities and national engagements, increasing the focus on survivorship and end-of-life concerns, and fostering the growth of AONN+ membership, which is approaching 8300, up from about 100 at the Academy’s inception 9 years ago.
“We’re really proud of that, and we keep growing every single year,” Ms Shockney said.
AONN+ Chief Nursing Officer and Senior Director of Strategic Planning and Initiatives Danelle Johnston, RN, MSN, ONN-CG, OCN, CBCN, reported on the various AONN+ committees and their hard work throughout the year.
“What they have planned for our membership in 2019 is very, very exciting,” she said.
Cheryl Bellomo, MSN, RN, OCN, ONN-CG, further discussed the resources provided by AONN+, as well as the conference itself.
“The work that goes into the abstracts and posters for this event is tremendous,” she said.
Sharon Gentry, RN, MSN, AOCN, CBCN, agreed and addressed those who submitted abstracts and posters.
“Please don’t be afraid to submit an abstract,” she said, adding that the Journal of Oncology Navigation & Survivorship is a wonderful publication to which to do so. “They will work with you to make you successful.”
Ms Gentry also shared her enthusiasm about the 20 local navigator networks that have formed under AONN+, also explaining the value of these groups for sharing knowledge, networking, mentoring, and venting to one another.
“You all face the same issues, so you can come together and share strategies,” she said.
Denim & Diamonds Gala Event Gives Honorees Chance to Shine
A full slate of Saturday events culminated in the one for which everyone seemed to be waiting—Denim & Diamonds: The AONN+ Awards Event. Adding some “bling” to their blue jeans, conference attendees gathered to honor awardees, as well as let their hair down and have some fun.
Honoring individuals and organizations for excellence in the field of oncology navigation, the AONN+ awards are given in a variety of categories that touch all aspects of the care spectrum. Perhaps the most poignant among them is the CONQUER: the patient voice Hero of Hope Patient Award, which recognizes someone whose life has been touched by cancer for outstanding contributions to the cancer community.
AONN+ Co-Founder and Program Director Lillie D. Shockney, RN, BS, MAS, ONN-CG, a 2-time breast cancer survivor, was honored with the Lifetime Achievement Award for her tireless work in oncology navigation. Ms Shockney is University Distinguished Service Professor of Breast Cancer and Professor of Surgery at Johns Hopkins University School of Medicine, as well as Co-Developer of Work Stride: Managing Cancer at Work, Johns Hopkins Healthcare Solutions. Her myriad contributions to the field are invaluable. Truly an inspiration to navigators everywhere, Ms Shockney continues to make an indelible impact for patients.
The Virginia Cancer Patient Navigator Network won recognition as the Outstanding Local Navigator Network. Pamela Goetz, BA, OPN-CG, Oncology Survivorship Navigator, Sibley Memorial Hospital, Johns Hopkins Medicine, received the AONN+ Ambassador Award. Linda Burhanssitipanov, PhD, Founder, Native American Cancer Research Corporation, won the Putting Evidence into Practice Award. The Miami Cancer Institute was recognized with the Organizational Recognition Award. Ashley Marks, RN, BSN, OCN, CHPN, CBCN, GYN/Oncology Nurse Navigator at Woman’s Hospital, Baton Rouge, LA, received the Oncology Navigator Excellence Award.
The Hero of Hope Patient Award was presented to glioblastoma survivor Jessica Morris, whose cancer journey led her to create OurBrainBank, a smartphone app through which patients with glioblastoma can share information on their experiences with the disease to provide valuable data to cancer researchers. Ms Morris’ pioneering work truly makes her a Hero of Hope to the entire cancer community.
The inaugural AONN+ Awards Event positively sparkled, with deserving individuals being lauded for their accomplishments and all attendees having an opportunity to celebrate among their clinical colleagues. Tricia Strusowski, MS, RN, Chair of the AONN+ Metrics Subcommittee, had it right when she proclaimed, “We’re going to have a toe-tapping, two-stepping time tonight!”