Why Aren’t We Working Together?

It’s not an outcome Dr. Harold Freeman, President and Founder, Ralph Lauren Center for Cancer Care and Prevention, or anyone else could have imagined, but since cancer patient navigators were introduced in the 1990s, we’re seeing battles and competition over just about every aspect of it: How is patient navigation defined? Should navigators be cancer survivors? Nurses? Social workers? Doctors? How does someone become a navigator? What do navigators do? Who pays for navigation services? Does every cancer patient need a navigator? Do navigators really make a difference?

Dr. Freeman’s navigators functioned in an underserved, minority community and made a difference in mammography screening, follow-up, and other outcomes. That model morphed into the ACS navigation program trained lay navigators in ACS staff roles. By 2002–2003 a handful of oncology nurses and social workers called themselves “navigators,” and role descriptions, competencies, educational preparation, qualifications, organizational structure, and salary scales were all over the map. They still are. There is little scientific evidence of the value and outcomes of navigation and most services exist on “soft money”:  Long-term sustainability is always a concern.

C-Change (www.cancerpatientnavigation.org) generated a definition mid-decade. Nurse navigators, hungry for collegial networking and resources, founded the National Coalition of Oncology Nurse Navigators (www.nconn.org) in 2008 and in 2009, the Academy of Oncology Nurse Navigators (www.aonn.org): both have similar missions and hold national conferences. Realizing that the “navigation movement” is not a flash in the pan, national cancer organizations have come to the party, too. The Association for Community Cancer Centers includes “navigation services” in its cancer program standards (http://acc-cancer.org) and offers webinar programs and other resources for navigators. Rumor has it that the American College of Surgeons Commission on Cancer may insert navigation services in its standards, too.  The Oncology Nursing Society (www.ons.org), the Association of Oncology Social Work (www.aosw.org), and the National Association of Social Workers (www.nasw.org) are crafting a joint position statement and plan joint sessions for the 2010 meetings.

ACS plans an invitational meeting to explore outcomes linked to navigation. In April this year, George Washington Cancer Institute will offer “executive training on navigation and survivorship”-“a two-day training program to equip decision-makers at resource-strapped organizations with the tools needed to launch and sustain navigation and survivorship programs...”.

There are few signs of collaboration and no evidence that any of these efforts are part of an organized process to develop or provide consistency to the “navigator” role. It’s apparent that many organizations and individuals have jumped on the “navigator” bandwagon, but an underlying foundation has yet to be built. Without defining competencies, educational and experiential qualifications, guidance for where navigation fits in organizational structures, how can we even begin to understand the potential and limitations of the role-let alone how to advance it-if, indeed, its worth is demonstrated?

In the dj-vu all over again mode, consider the evolution of the oncology clinical nurse specialist role. It too, began with recognized needs in patient care. But it wasn’t until the role was clearly defined, that the CNS role could be studied and its value demonstrated. The “navigator” role is at an important transition point: it is now an informally and haphazardly created role and does… what? Will it just become more complicated and ill-defined as all the interested parties contribute to the chatter? Or, is there a chance at this moment to collaborate, bring together thought-leaders, clinicians, and the intended benefactors-patients and families?

These stakeholders could craft an agenda directed towards meeting the needs of patients and families who should not have to add the confusion of the health care system to the hard work that is part and parcel of coping with cancer and its treatment. Let’s work together-each person, each organization contributing in the unique ways they can-to optimize the navigator role.