The Academy of Oncology Nurse & Patient Navigators and the American Cancer Society Local Navigator Networks Leadership Interviews: A Deeper Look into Development

February 2021 Vol 12, No 2

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Original Research
Sharon S. Gentry, MSN, RN, HON-ONN-CG, AOCN, CBCN
Program Director, AONN+

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Background: In 2019, the Academy of Oncology Nurse & Patient Navigators (AONN+) collaborated with the American Cancer Society (ACS) to develop a paper outlining effective strategies for the development, implementation, and sustainability of local navigator networks (LNNs). To understand the experiences of existing AONN+ LNNs, a 45-item multiple-choice and open-ended survey to capture LNN composition, meeting structure, as well as successes, best practices, and challenges, was e-mailed to 23 LNNs that had been operational for at least 1 full year (see “The Academy of Oncology Nurse & Patient Navigators and the American Cancer Society Survey: Collaboration on Building and Sustaining Local Navigator Networks” in this issue for results). Following the quantitative survey, 5 LNN leaders were invited to participate in follow-up phone interviews to explore more detailed information about local network development.

Purpose: To share the in-depth knowledge from the follow-up interviews to help others seeking to build or sustain effective networks, and to understand the experiences of existing AONN+ LNNs, including their beginnings with successes and challenges, developmental resources, program strategy, and evaluation.

Methods: A 10-item open-ended questionnaire to capture detailed information on LNN formation, development support, and program evaluation was developed by the national AONN+ LNN liaison and ACS leader. In 2019, a 1-hour telephone interview was offered via an e-mail invite to 10 LNN network leaders who had been consistent in completing 4 meetings per year, submitting an annual report, and had completed the 2019 initial 45-item multiple-choice and open-ended survey.

Results: Five LNN leaders responded with an interest in follow-up interviews (a 50% response rate), and each was interviewed by the AONN+ LNN liaison and ACS leader. Leaders in the interviews identified key issues to LNN development. These included having (1) AONN+ interaction, (2) a defined purpose, (3) committed, engaged leaders, (4) dedicated time, (5) organizational connections, and (6) outside facility contacts and networks. Membership, attendance, and communication were common challenges that each LNN overcame.

Discussion: In addition to these key factors, leaders supported the value of a strategic plan that included evaluation activities to measure LNN programming success/outcomes. Personal connections with other LNN leaders enhanced development.

Conclusion: AONN+ LNN leader in-depth follow-up interviews provided a deeper understanding of network development. These LNN papers and lessons learned by successful LNNs will be integrated into the LNN training resources/toolkit that can be shared with new or established LNN leaders to facilitate success in local settings.

In 2019, the American Cancer Society (ACS) received funding from a Merck Foundation grant to develop a paper outlining effective strategies for the development, implementation, and sustainability of local navigator networks (LNNs). An open-ended survey was e-mailed to the leaders of LNN networks that had been operational for at least 1 year. The purpose was to capture LNN composition, meeting structure, successes, and best practices in implementing, developing, and sustaining networking. This exploration of LNN leader thoughts was followed by telephone interviews to gain a deeper and richer insight into LNN initiation and development.

The purpose of this paper is to share the in-depth knowledge from the follow-up interviews to help others seeking to build or sustain effective networks, understand the experiences of existing AONN+ LNNs, including their beginnings with successes and challenges, developmental resources, program strategy, and evaluation. Such qualitative findings from “boots on the ground” network leaders provide guidance to other local networks to develop successfully and assist in process evaluation that contributes to improvements in current program strategies.

Methods

A previous review of the literature through PubMed of any articles that addressed community professional local network development, implementation, and/or sustainability was performed without success on articles applicable to this survey. The ACS and AONN+ project team consisting of the ACS Director of Cancer Control Initiatives, ACS Director of Patient Navigation, AONN+ Chief Nursing Office, and AONN+ LNN liaison reviewed findings from the initial quantitative survey, and those results raised questions that the team felt required further detailed responses that would significantly benefit subsequent LNN development and leaders. Working off the responses from the initial survey, the team developed a 10-item survey that could be answered succinctly within 50 minutes after the introductions of the LNN leader to interviewers and a brief overview of the LNN structure. The focus was on details about starting the LNN—developmental strategies, including advantageous resources, planning strategies, evaluation techniques, and an opportunity to share additional LNN tips (Table 1).

An open-ended one-on-one interview approach was used by the interviewers (one from AONN+ LNN liaison and the other an ACS representative) who had administered and completed analyses from the original LNN quantitative survey. The more in-depth qualitative survey focused on the foundation, development, and sustaining program strategies. Both interviewers wanted to collect responses and encouraged sharing stories of lessons learned from the leaders. This approach allowed the LNN leaders to describe their network’s unique journey and decision-making pathway for LNN development, program strategies, and evaluation. The interviewer probed on stories or the narrative for a clearer understanding of the LNN leader thoughts and reasoning with the goal of publishing the most common themes for success from current and future LNNs. The questions were arranged in logical order, with LNN initiation starting the conversation and then moving into program planning followed by evaluation.1 The survey ended with an opportunity for the leader to “tell more” about anything related to their LNN to provide additional insight into their practices.

An e-mail was sent to the successful LNN leaders explaining the purpose to speak in person for a more detailed understanding of their LNN. The e-mail explained the time commitment, scheduling flexibility, and how their answers reflecting lessons learned would be used anonymously and integrated into LNN training resources. An affirmative response was interpreted as permission to share the LNN leader’s insights.

A telephone interview allowed enhanced access to geographically diverse leaders and greater flexibility for scheduling time around their work schedule.2 The criteria for selecting the more successful LNN leaders required that they had conducted 4 meetings per year, submitted an annual report to AONN+, and had completed the initial 45-item quantitative multiple-choice and open-ended survey. This allowed the interviewers to capture lessons learned for LNN success to help others interested in starting or sustaining effective and efficient networks. The time allotted was 1 hour for introductions, review of project, recommendations for others, and collecting responses to each question. The conversations were recorded, and notes were captured by the interviewers.

The 2 interviewers reviewed the recordings individually and agreed on the findings shared in this paper. The individual notes were used to support findings. The interviewers did not read or code one another’s interview notes for themes or common concepts found in the recorded transcript.

Findings

Ten LNN leaders were asked to participate in the follow-up survey to share more detail on network development experiences. Five leaders accepted the invitation and were scheduled for interviews. The nonresponders did get another e-mail invitation 2 weeks after the initial invitation but did not show interest. The 50% response rate represented LNN leaders who were full-time employed nurse navigators. The geographic distribution was the Northeast, South, and East regions.

The leaders were initially asked to describe how the LNNs got started. Two navigators initiated the network by applying to AONN+ for an LNN site. One of these leaders had been part of a statewide navigation meeting under a state Cancer Action Coalition prior to applying to be an AONN+ LNN. The 3 other LNN leaders described not being part of the inception but that the LNN was handed down to them by the founder. The 5 leaders all commented on how the attendance “dwindled down,” and their goal was to revive the local network.

When asked how long it took to get the LNN started, the most common answer was 3 months for an initial meeting by 3 of the leaders, and 1 leader commented that it took 6 to 8 months to expand to members outside her facility. The fifth leader was unaware of the background time development. The leaders were asked what steps were involved in starting the LNN, and all agreed that the initial meeting open to any interested navigators to talk about what the LNN wanted to accomplish or the mission was valuable. From the 3 leaders who did not originally start their LNN, the focus was on a stronger outreach to membership. Common themes from this inquiry were identifying and engaging other nurse navigator leaders in the area, exploring meeting time and site, and taking time to network.

Four of 5 leaders shared their biggest successes and practices in developing the network, and each one used a phrase comparable to “getting to know each other.” The responders noted camaraderie within their own healthcare system as well as in outside facilities. Two leaders mentioned the AONN+ community and leadership as a part of the success in starting the network.

Four of the 5 leaders noted membership and attendance as a challenge during LNN development. Two leaders initially faced communication challenges in promoting outreach of the LNN meetings and receiving ideas or resources for the group but overcame with varying outreach avenues, such as social media, newsletters, and a navigator directory.

When asked about resources or guidance that supported the development of the LNN, 2 themes emerged. One was the AONN+ connection via the LNN liaison, national leaders, website, LNN table at conferences, and encouragement from other LNNs. The other was key well-connected oncology leaders in the community, such as navigation leaders in various local facilities, and advocacy agencies that could promote and facilitate LNN development and vision. One leader described them as “mom behind-the-scenes.”

An ability to network or convene with other leaders, either in person or via a website, was the resource that 3 of the 5 leaders said would have been helpful to the development of the LNN. Two leaders mentioned that a list of meeting topics would have been helpful. Such topics included mentoring, best practices, and challenges getting younger navigators involved locally.

Four of the 5 interviewees responded to the question about a strategic plan or program calendar to provide guidance for the upcoming year. Two leaders had annual program planning in place, with 1 coordinating their LNN meeting(s) in conjunction with the state cancer planning meetings, and the other confirming all meeting dates and times in December for the upcoming year. The other 2 were more flexible in developing the meeting topics but had set months and dates for the entire year. For example, they set the second Tuesday evening of February, May, September, and November as a meeting date but only had topics confirmed for February and May. All 4 leaders took input from membership on planning topics.

Only 1 leader had a formal program evaluation plan. Three leaders conducted process evaluation of activities for successful meetings by informal discussions and defined success by measuring membership growth in attendance or a consistent positive attendance pattern, and how members react. One of the informal evaluations included programs being evaluated at every meeting after the program through colloquial discussion as well as leadership review.

To provide additional insight into their practices, each leader was given time at the end to provide any other comments on LNN development. Three of the 5 responded, and each noted that the AONN+ welcome packet that is sent to LNN leaders upon approval of a network prior to the first meeting and the information on the LNN website were valuable. One leader made a particular note of the policy that attendees do not have to be members of AONN+ and saw this as a positive opportunity to engage other members. Two leaders suggested more mentoring from AONN+, with specific LNN leader mentoring and training or LNN activities at conferences. Another desired more information on virtual meeting.

Discussion

There was a 50% response rate from 10 effective LNN leaders. Table 2 summarizes the demographics of the LNNs representing the 5 responding LNN leaders. The full-time employed nurse leaders volunteered and shared their experiences in the hope that others will succeed helped by their guidance.

The lessons gleaned from starting an LNN or taking over the leadership to promote further development can be applicable to the success of future leaders in terms of how, when, and what. “How” is met by talking with the AONN+ LNN liaison at conferences or in a virtual format via the national web page at https://aonnonline.org/contact-us. One leader said “I remember thinking as I left the conference after talking with the AONN+ LNN liaison that we could probably do this.” She tacked the initial LNN meetings onto an already established state cancer meeting and volunteered to be the leader with no buy-in or support from her institution leadership. Another leader reported visiting the “Interested in starting an LNN?” table at the AONN+ conference to learn more and received encouragement from other successful networks. The community link on the AONN+ web page will take you to “Starting an LLN network” with information and step-by-step instructions and videos to support you.

One leader of a group with fewer than 10 participants used a quarterly pharmaceutical dinner to provide education, networking, and leadership opportunities, and it later grew to a consistent 20 participants. Another leader reported that their network was started by a navigator at another facility, but when the navigator moved into another role, the network faltered. The new leader stepped up with navigators from her facility to share best practices and network around care coordination and now, with more than 20 participants, connects many facilities in the community. Another network started simply by inviting patient and oncology nurse navigators in their cancer center, as well as those in other local healthcare systems, to participate. The leaders suggest inviting “anybody that touched the patient via navigation, such as social workers and financial advocates.” The key is to start where you are and understand that it will take volunteer leadership and time.

The sage advice from leaders on the “when,” or time, to get the LNN started was around 3 months for the initial meeting to more than 6 months to get others in outside facilities involved. A to-do checklist for preparation success reads like this:

  • Connect with other navigators to coordinate
  • Identify potential members who provide navigation services and conduct an initial outreach period. Think regionally and allow response time for childcare planning and other tasks to permit attendee commitment
  • Get names of pharmaceutical or medical representatives with topics they can provide (industry will also have a list for invites)
  • Set meeting date, place, and sponsor
  • Plan outreach like e-mail, phone, social media

Some key insights were to “find 1 person that you know would be willing to help, whether it is a navigator, a pharmaceutical representative, or a representative from the ACS or another advocacy organization to help market and start it.” One leader reported that their network identified key people and conducted outreach through other nursing affiliations to identify people who could benefit from an LNN.

The “what” focused on tasks involved in LNN development. Start by identifying a few engaged leaders. “Just 2-3 people held it together; they volunteered to be involved and were willing and could be involved to do extra work for no pay.” One network leader reported that their network started with a group of primarily breast navigators from 3 different health systems and 2 coleaders. Interestingly, 1 leader described a silent supporter—“She was really incredibly important to getting started and was very supportive of the group, but she didn’t want to lead the group because of her own position as a nurse navigator manager in her facility. She was behind the scenes and provided vision.”

Another task emphasis was on connections for membership in the community and medical neighborhood. Network with other navigators, leaders, or other healthcare providers in the local area who provide care across the cancer continuum for patients, including non-oncology screening navigators in the primary care setting, patient navigators, oncology nurse navigators, social workers, dietitians, and financial assistance counselors. “Our coleader was from one cancer center, and our scribe was from a different center. It just happened that way. It allows the focus to not be on a specific cancer or institution and shows the diversity of our group and makes more sharing available to participants.” One leader reported that their network consisted of 3 local hospitals with different navigation programs. Another leader was a disease- specific navigator who works for a private physician. However, most navigators in the area work for a local oncology group doing multisite navigation, and this leader found the network “helpful to pull together and bridge groups.” “We had low numbers but a strong start as people saw value gained in friendships and meetings; we now have a solid base of up to 30 members at a meeting.” A description of a perpetual membership list was described as including members “who had attended at least 1 meeting.” They continued to receive local invites consistently and were removed from the list if requested by the member or the if the LNN received undeliverable invites. “Be grateful for those who show up; the people who need to be there are there and take away what they need to take away. Don’t get frustrated, persevere.” Those who took over the LNN shared membership avenues to enhance growth, such as reviewing and updating membership lists with an outreach through social media, using SurveyMonkey for a new needs assessment, and pushing meeting notices through other professional societies and different affiliations in the community.

The LNN purpose is another task that is reflected in a mission statement. One network leader reported that at the first meeting participants discussed what they wanted to accomplish together and directed it to navigator barriers. “A lot of navigators do not get education on new drugs on-campus due to restrictions on interactions with drug reps...or are not able to explain with confidence that we can get a medication for you and it has great support, so we bring the drug reps into the meetings to get the education they need.” “We need to get together, this is new, we need to work together for the benefit of the patient.” A network leader reported we “read the goals, objectives, and mission aloud at the beginning of each meeting to refocus—hey this is why we’re here.”

Another part of “what” was meeting time and site. Partner with network members to identify meeting resources and preferences and poll them on day, time, and month choices. “Membership waned in the past when the meeting was held on Saturdays.” “We used to meet in February, but the weather was a barrier, so now we meet in March, June, and September and have a celebration in December.” Some leaders suggested centralized locations to help support attendance when possible. One network leader reported that the local ACS provided free meeting space, and another network used Cancer Support Community space. Some networks are statewide, and in-person meeting coordination can sometimes be challenging, so they “make the LNN meeting right after the health system and their affiliate meetings since people were already coming out, and it is so far to travel.” Because a focus on navigation is part of their state plan, another network leader approached their state cancer coalition and tacked network meetings onto existing meetings.

A common success noted by the leaders in development was getting to know other people in navigation, both from their own facility and from outside healthcare organizations. Leaders described the network as “creating a safe environment to talk and bring up things and build up each other”; as a place to “compare navigation process/resources”; and as “very inclusive to everyone based on the role they play as a navigator instead of their title.” The LNN was a team-building concept for those working in the same healthcare organization, as reflected in comments like “giving an opportunity to talk outside of work” and “seeing senior leadership interacting/engaging with us, to feel like they are one of us.” Another common success dispels a fear that some navigator managers have as they label LNNs as a place to share trade secrets. One network leader summed it up by saying, “Facilities are competitors. Collaboratively generate topic suggestions and get to know each other, so that people are comfortable talking and bringing things up. Competitors see past boundaries and understand that it is ultimately about patient care.” Taking time to network produced valuable benefits such as getting “small community cancer centers and bigger institutions to interact,” and “The meeting is not where you work; focus on connections to expand knowledge and resources.” “Erasing the lines between competitors and realizing we are an extension of each other is both our biggest challenge and reward.”

Using the AONN+ community and interacting with AONN+ leadership was a contributing factor to the LNN success. “AONN+ national is there if we need them. The response times are almost immediate...have never waited any more than 24 hours for a response to a question or concern.” “AONN+ is a great resource to navigators that did not exist 13 years ago.” Visit the AONN+ website to sign up. “It is a simple process; they get right back to you online; it is fairly easy; what do you have to lose? It can take off or not; if it does, it can enrich your navigators and their navigation programs.” Review any resources provided, including the AONN+ LNN welcome packet, to get ideas to start implementing your network. “Why wouldn’t you get help from AONN+ if you could to start your LNN?” Connections at conferences or with established network leaders to seek guidance and resources was supported by all leaders to learn as much as possible, share best practices in programs, and network. “Participate in AONN+ LNN networking opportunities at AONN+ conferences (networking receptions) and at home (network mentoring).” “Talk to other network leaders or members at AONN+ conferences to discuss network realities and opportunities.” One network leader shared that it is better “networking with other leaders to discuss best practices instead of just winging it.” “Seek guidance from past network leaders. They can be instrumental in helping new networks getting started or in helping their network by passing on knowledge.”

Challenges in developing an LNN involved membership and has been addressed previously, but several comments drilled down to attendance and retention. Network leaders reported an understanding of the reality that people are busy with their jobs, experience difficulty getting paid or time-off support from their employers, or experience generational challenges such as younger nurses balancing new families. Interestingly, communication was a challenge, but ways to overcome it were shared and could be part of a solution to attendance and retention. Network leaders reported that their networks developed a Facebook page or other social media presence to get messages out, including membership information and AONN+ updates, to help connect to people who cannot attend the meetings. Another leader reported using “a monthly newsletter to provide support to members, share events, changes, birthdays, etc.” Another network developed a navigator directory for their city and surrounding areas in addition to a standard navigator network form for sharing patient barrier lists and for tracking and coordinating financial navigation details. One network leader reported using RSVPs to help generate excitement. “We all really look forward to sharing our day-to-day and challenges.”

Playing into attendance were the meeting topics, and many leaders used pharmaceutical drug support to gain nice meeting venues and speakers who would often feature the latest drug for a specific disease rather than general topics that were suitable to all types of navigation. “We work closely with a handful of pharma that want to sponsor talks about drugs. Be aware that they do have other talks available. Ask about general topics like staging, side effect grading and management, and self-care, and ask them for a list of potential topics. Try to steer clear of branded topics or medications, such as the next chemo drug in multiple myeloma, and instead focus on side effect management, for instance, for immunotherapy, or addressing patient-centered needs like how to identify patients who need genetic counseling.” “Broaden your request to include board members, nonclinical educators, and AONN+-sponsored speakers.” Several network leaders reported incorporating a self-care topic into the meeting format to allow structured time for yoga, art therapy, and music therapy.

AONN+ support and key well-connected oncology leaders have been identified as resources that supported LNN development. The AONN+ LNN liaison and other national leaders, website, outreach at conferences, encouragement from other LNNs, and immediate response times to an inquiry to the national organization were noted. Key well-connected oncology leaders in the community were described as very supportive of the network and facilitated organization. Resources included current AONN+ members and AONN+ nonmembers who could attend gatherings and then network about navigation outside the meeting, experienced leadership attendees from other professional organizations, and past LNN chairs with their knowledge base. One leader pointed out that as a leader, you need to have recognition in the community and an identifiable listing so that you can be found.

The unmet needs noted were the inability to connect with other LNN leaders and a list of meeting topics. Although leaders can access the multiple network chairs or cochairs via the national website, the site information does not reflect the success, struggle, or size of the networks. “I wanted to connect with other leaders to discuss best practices; how do we continue to grow; how do we avoid monotony?” “To chat in person with other LNNs in the region would have been helpful.” A list of meeting ideas is provided to new LNN leaders as part of the welcome packet, but the LNN responders wishing for this assistance were not the original leaders of the developing group. Also, the Member’s Memo that is published biweekly via e-mail to LNN members is focused on LNN events and suggestions. In response to the unmet needs shared in the interviews, a subgroup from AONN+ leadership will review and create actionable solutions to promote support to new LNN leaders.

The leaders were consistent in having a strategic plan or program calendar to provide direction and focus. Each has set dates/months for programs, but some plan on an annual basis, and others plan as the year evolves. An annual planner reported that their network had built a strong reputation that has created demand and support from local drug representatives resulting in bookings into next year. “If a drug rep sets up a talk, they know they (members) will show up, so they make a commitment and keep it.” Another LNN that plans on a rolling basis during the year uses member outreach to request agenda topics, new initiatives, and any oncology changes that can be used in collaborative planning. “This value provided our members with inclusivity of varying roles/titles and health systems and has produced an increase in membership and member dedication over the years.” She reports their network has grown by word-of-mouth. Leaders recognized the value of having meetings planned with topics to help understand the comprehensive nature of cancer care. Strategic planning can serve as a communications instrument to create sustainability.3

Evaluation for program success was mixed among leaders, with most measuring success via an informal process. One network leader reported that they were “measuring success by membership and how members react; if they keep showing up, we are doing something right.” Another reported that their group provides “a lot of feedback in an informal discussion during an open session at the meeting where they debrief on what is working or not working.” They also interpret growth as positive signs for successful outcomes. The leader with a formal program evaluation process not only assesses the topic(s) covered but also asks if the organization is meeting the members’ needs. The one leader who did not have an evaluation process openly discussed that they had not thought of doing that, but after being questioned, saw the value to assess gaps in care.

The additional insight provided during an open comment request pointed out the AONN+ LNN welcome packet and LNN website information as key to LNN formation and success. The packet and website will be a part of the AONN+ review in the future to be inclusive of information gained from surveys and interviews of LNN leadership. The comment pertaining to LNN attendees not having to be members of AONN+ will continue to be part of AONN+ membership strategy to engage people on the local level and hopefully pique their interest in “members only” tools, such as continuing education units, discounts, peer networking opportunities, and access to navigation projects to promote practice sustainability. Two leaders did suggest leadership mentoring and training from AONN+ or LNN activities at conferences. This request was heard and reacted to at the 2020 virtual annual conference. A 5-hour preconference session by the AONN+ Leadership Council members was offered at no charge to each LNN chair or cochair. The session highlighted: avenues to identify and improve leadership skills, ways to promote team building and address challenges, insights into effective professional branding, the current landscape of healthcare and oncology, and how to gain a competitive advantage with the overall goal of increasing leadership skills of participants. Hopefully, these topics can be added to the LNN resources website in the future.

Limitations

None of the leaders who volunteered were from the West or Midwest United States, represented LNNs with fewer than 10 members, or were lay/community patient navigators. Unique information could have been gained from these leaders. The follow-up qualitative surveys were conducted prior to COVID-19 and do not reflect changes from meeting in person to virtual meetings. There was no process used to address interviewer bias.

Conclusion

The findings from the in-depth follow-up interviews supported AONN+ interaction, committed and engaged leaders, time, organizational connections, as well as outside facility contacts, networking, and a defined purpose as key insights to LNN development. Membership, attendance, and communication are expected challenges that can be conquered. Personal connection with other LNN leaders can enhance development and is a goal for AONN+ to address. A strategic plan or program calendar can provide direction and serve as a communications instrument to create sustainability. Evaluations for programs and leadership can be flexible to LNN choice. The voice of experienced LNN leaders can point out unique findings to enrich navigation programs.

References

  1. Jones TL, Baxter MA, Khanduja V. A quick guide to survey research. Ann R Coll Surg Engl. 2013;95:5-7.
  2. Drabble L, Trocki KF, Salcedo B, et al. Conducting qualitative interviews by telephone: lessons learned from a study of alcohol use among sexual minority and heterosexual women. Qual Soc Work. 2016;15:118-133.
  3. Strategic planning: why it makes a difference, and how to do it. J Oncol Pract. 2009;5:139-143.

Acknowledgments

I would like to thank the following individuals for their contributions to this project: the AONN+ LNN leaders who volunteered their time and knowledge, and Nicole L. Erb, BA, former director, Cancer Control Initiatives, American Cancer Society.

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