History

National Coalition of Oncology Nurse Navigators

 

In 2003, in Maryland, a grassroots effort took place to bring nurses together who were working with newly diagnosed breast cancer patients. Jan Simpson, RN and Tina Beerman, RN reached out to the breast center nurse coordinators in the Maryland and Washington D.C. area to form a group that would meet regularly for networking, education and support of the work being done in their respective hospital breast centers. The first meeting took place in September 2003. The group has expanded to include the Northern VA area and the meetings have been taking place 4 times a year for more than 6 years. This dedicated group of nurses has put aside the fact that many of their hospitals are competitors and have focused on improving the care they provide as patient advocates, navigators and educators in order to serve the best interest of their patients. As an outgrowth of this informal networking and support system, and in a desire to share this valuable forum with nurses nationally, in 2007, five of the members of this local coalition of breast center coordinators decided to form a national professional association called the National Coalition of Oncology Nurse Navigators, NCONN.

 

Development of NCONN

 

In November 2007, the five co-founders of NCONN, Tina Beerman, Rebecca Trupp, Minna Manalo, Deborah Cook, and Sharon Francz met to talk about what this local networking forum could look like if “taken to the next level.” Concurrently with this, the American Cancer Society Patient Navigation initiative was being implemented in more hospitals and was being very well received. The difference between the ACS Patient Navigator and the breast center navigators/coordinators is that the ACS Patient Navigators are most frequently laypersons and the breast center navigators are nurses. The co-founders of NCONN concluded that the roles are very different when the navigator is a layperson and when the navigator is a nurse. It became evident that this difference is crucial in the services provided to the patient and family. As a result, the five nurses made the decision to craft a mission and vision statement and explore the notion of developing a professional association dedicated to the support of the oncology nurse navigator.

 

Steps to Create a Dream

 

In January 2008, we met and began by brainstorming to express the ideas that each of us had around the goals we saw as relevant and the objectives we felt were critical to address. It was clear from the outset that we were all thinking the same thoughts about the lack of recognition of the work of the oncology nurse navigator. We determined that the critical nature of our work needed to be brought to the attention of the oncology health care professionals and the public. However, more importantly, the voice of nurse navigators across the country needed to be heard and united in order to bring framework and credibility to the role.

 

Mission and Vision

 

We decided to develop our mission and vision statements as a guide to define what we “are all about”. We felt that what was needed was a professional association to represent the interests and growth of the oncology nurse navigator as a new discipline in oncology nursing. With this in mind, we felt that this was the right fit and decided to proceed.

 

We explored the business models that might be appropriate and contacted an attorney who specialized in non-profit health care. The initial meeting with the attorney was productive enough to begin the process of becoming a legal entity and to file for 501 (c) (3) non-profit status with the Internal Revenue Service.

 

Along with our attorney, we drafted By-Laws, elected officers and began work on a business plan. At this same time, we started to discuss what we could offer to potential members. Understanding that communication and networking is invaluable for oncology nurse navigators, we realized that an interactive website was the first “product” that should be developed. NCONN became members of the Maryland Association of Non Profit Organizations. We utilized this resource to begin the process of leaning about non-profit development.

 

NCONN Website Launches

 

The website “went live” with a front page in February 2008. Work continued on an online membership application as well as an interactive list-serv and Discussion Forum. We began work on an infrastructure for the organization and made decisions about how the workload would be shared and how we would fit this into our current work as oncology nurse navigators for our respective hospitals.

 

We began to survey the local, regional and national environment for contacts and

sources of interest to oncology nurse navigation. We quickly learned that there were numerous organizations with an initiative in patient navigation. However, none focused on the oncology nurse navigation role. This validated our sense of commitment to forge ahead with our mission and vision.

 

In June 2008, the website was expanded to include additional pages and an online membership registration. The first members were registered within the week. The list-serv became active and was populated with members “talking” to one another almost immediately. The organization, as a professional association, launched within 6 months of the conception of the idea.

 

Contacts within industry were made and nurtured and as a result, there began to develop relationships and partnerships with businesses who expressed the desire to support the work of oncology nurse navigators. This has been a crucial step in the process because as a non-profit, NCONN needed to find financial support to grow.

 

NCONN Reaches ONN’s across the Nation

 

Almost immediately, we learned that the nurses who are navigating cancer patients and families need mentors. NCONN felt that it would be valuable to offer opportunities for oncology nurse navigators (ONN’s) who are in close geographic proximity to each other the opportunity to meet each other, network and share their resources. Troubleshooting of complex navigation issues and programmatic growth are also areas of interest to navigators. Reaching out to navigators in Houston, Texas at Memorial Herman Medical Center as well as MD Anderson Cancer Center and surrounding medical facilities NCONN hosted its first educational networking meeting in November 2008. This was the first opportunity that many of these working navigators had in which they were able to meet other ONNs. Because of the success of this first event, NCONN hosted two more educational dinner meetings during the San Antonio Breast Cancer Symposium, December 2008. Once again navigators from across the nation were able to dialogue and network with other ONNs. In May 2009, navigators in the Atlanta, Georgia area reached out to NCONN and requested a similar networking opportunity in their local region. In June of 2009, NCONN hosted its fourth dinner networking event. NCONN is in the process of expanding this to navigators in other regions across the country.

 

In early 2009, it became apparent that navigators wanted to do more than have an online forum to share ideas, find answers to relevant clinical navigation issues and mentor each other. As a result, NCONN planned its first national conference “Changing the Face of Cancer Care” scheduled for October 10, 2009 in Baltimore, MD.

 

In addition to dinner, networking events NCONN was invited to attend a navigation discussion co-hosted by the National Association of Social Workers (NASW) and the organization C-Change Collaborating to Conquer Cancer. Because of the fragmentation of health care across the United States, navigation is increasingly becoming an important component of cancer care. C-Change recognized this need and has developed a patient navigation tool kit for health care professionals. C-Change also recognized that the challenge is in how to get this toolkit into the hands of functional navigators. In November 2008, NCONN was invited to attend the 10th Annual C-Change meeting in College-Station, Texas at the George Bush Presidential Library and Museum. The leadership of C-Change was interested in NCONN and wanted to determine whether this partnership was a good fit.  Since this meeting, Sharon Francz, President and Executive Director for NCONN was selected as a partner member of C-Change and attended the 11th annual meeting in June 2009, Kennebunkport, Maine.

 

After meeting with the Advisory Board Oncology Roundtable in January 2009 NCONN was featured in their Oncology Roundtable members-only blog and in the February edition of the Oncology Watch as a special feature.

 

The leadership of the Oncology Nursing Society met with the Executive Board of NCONN in early January 2009 and engaged in dialogue about the role of the oncology nurse navigator and where it fits into the patient care experience. The leadership of ONS acknowledged that an ongoing dialogue between the two organizations should continue to take place.

 

The leadership was invited to participate on the speaker panel of the Association of Community Cancer Center’s (ACCC) Fall Conference Pre-conference session on patient navigation September 2009 in Minneapolis, MN.

 

The membership has grown steadily to date and is closing in on 400. Many members who joined early in 2008 have now renewed their membership for the third time. Participation with industry partners has continued to move forward. One of the more rewarding outcomes of the work from this past year shows itself in the language that nurses across the country are using to describe their role. The title of Oncology Nurse Navigator has become commonplace and NCONN leadership is recognizing that our colleagues are proud to take up this name. We are proud of the progress that has been made in this brief time and look forward to bringing more acknowledgements to the critical work of the Oncology Nurse Navigator.

 

NCONN Today

 

Today, NCONN is the first professional association dedicated to the support of the oncology nurse navigator. In October 2009, NCONN published and released the first copy of General Core Competencies for the Oncology Nurse Navigator, developed and written by working ONNs. August 30, 2010 NCONN issued a press release defining the role of the Oncology Nurse Navigator and the Patient Navigator. NCONN’s 2ndAnnual “Changing the Face of Cancer Care Conference” was held October 8-9thin Branson, MO. Membership is growing daily and the networking and support concept is blossoming as ONN’s across the country and even from Canada, dialogue with one another on-line everyday.