Lay health navigators: an initiative to navigate community members into lung cancer screening

Abstract

This manuscript aims to describe the development and evaluation of a lung cancer education and navigation program utilizing Lay Health Navigators (LHNs) to navigate members of at-risk communities to low-dose computed tomography (LDCT) screening. Given observed higher lung cancer incidence and mortality rates among people of colour in the U.S., we utilized and built upon previous cancer education efforts to develop an educational presentation specific to lung cancer. Recognizing the potential for navigation using community members, we trained and evaluated culturally- and linguistically-representative student volunteers as LHNs to address nonclinical barriers to screening, such as a lack of transportation funds. We observed statistically significant improvements in LHNs’ cancer knowledge (P < 0.01) and self-evaluated confidence in helping others access health services (P < 0.05). From July 2022 to November 2023, we held 41 lung cancer educational presentations with 1966 community members in New York City. Twenty community members were confirmed to be eligible for screening, and 57% were successfully navigated into LDCT screening by LHNs. This program provides support for existing research on the potential for lay patient navigation to address present disparities in cancer screening using non-healthcare professionals.

Introduction

Lay patient navigation is a promising strategy with growing evidence for addressing current health disparities. In this navigation model, individuals with no formal navigation or healthcare experience assist community members in overcoming nonclinical barriers to care. Previous studies have provided evidence that lay patient navigation can improve community knowledge on cancer and cancer screenings and increase cancer screenings among underserved communities [1–5]. However, much of this research has focused on breast and cervical cancer.

One area where lay navigation may be impactful is in lung cancer screening. Despite screening advancements, lung cancer-related mortality remains high, accounting for ~21% of all cancer-related deaths [6]. Additionally, disparities persist across racial and ethnic groups; Black, Latino, and Asian lung cancer patients are less likely to receive an early diagnosis compared to White lung cancer patients in the U.S. [7]. Black men, in particular, have the highest lung cancer incidence and mortality rates compared to other racial and ethnic groups [8]. Known contributors to these disparities include a lack of knowledge about lung cancer screening, inaccurate beliefs about lung cancer and screening, limited participation in screening, and stigma around smoking and lung cancer [9]. The American Lung Association’s (ALA) 2022 ‘State of Lung Cancer’ report found that only 5.8% of U.S. adults eligible for lung cancer screening were screened [7]. ALA also reported that although most people felt they knew ‘something’ about lung cancer, only 9% felt that they knew ‘very much’ about it [7].

Recognizing gaps in community knowledge on cancer prevalence, screening methods, and stigma, we developed and delivered a lung cancer education and lay patient navigation program to local communities in New York City (NYC). This program was modelled after the Witness Project of Harlem at Mount Sinai (WPH), part of the National Witness Project, an evidence-based, culturally-tailored education model that addresses disparities in breast cancer screening among Black and African American women [10, 11]. WPH has showed success and sustainability in educating Black communities in NYC, with nearly 3 000 community members attending WPH educational programs between 2020 and 2023 (unpublished data).

Adding to the growing literature on patient navigation, this manuscript aims to describe the development and evaluation of a lung cancer education and navigation program utilizing lay patient navigators, referred to as Lay Health Navigators (LHNs), to navigate participants to low-dose computed tomography (LDCT) screening. Our objectives for this programme were to (i) Deliver lung cancer educational presentations to at-risk communities in NYC; (ii) Navigate individuals from at-risk communities to LDCT screening using lay patient navigators, referred to as ‘Lay Health Navigators;’ and (iii) Evaluate the impact of lay patient navigation on LHNs and community members.

Methods

This program was funded by a sub-award through CancerCare, a national organization providing free, professional support services and information to people affected by cancer [12]. This funding supported our program from August 2022 to August 2023.

Educational program development

We modelled the content and structure of our lung cancer educational program to deliver to community members after WPH. Similar to WPH presentations, we provided basic background information on lung anatomy and lung cancer risk factors, statistics reflecting the racial disparities in screening, addressed relevant barriers to screening (e.g. medical mistrust and stigmas), and provided relevant resources to receive lung cancer screening, including our lung cancer screening navigation program. Content was based on evidence-based information from the ALA, Centers for Disease Control and Prevention, American Cancer Society, and other sources. The presentation also included a video featuring a lung cancer survivor who discussed the importance of education and screening. The final presentation consisted of a 45-minute lecture-style informational session, including the video.

To make sure that we reached the many diverse communities of NYC, we utilized Health Educators (HEs) to deliver the educational presentations. HEs, as part of the Community Outreach and Engagement team at the Tisch Cancer Institute at Mount Sinai, are formal public health professionals who collaborate with community-based organizations (CBOs) and faith-based organizations (FBOs) to deliver culturally- and linguistically-tailored cancer education programs to local NYC communities. Additionally, HEs are members of their respective focus communities, which include Black/African American, West African immigrant, Latino, Chinese-speaking, and Russian-speaking populations.

Community partner recruitment

After internal approval of the educational content, four community-based pilot presentations took place to garner feedback on topic relevancy and clarity. Both in-person and virtual methods were tested as potential presentation modalities. Following edits made from community feedback, community partner recruitment began through connecting with previously established WPH community partners and new organizations within NYC. HEs conducted outreach, targeting organizations in neighbourhoods with high rates of lung cancer incidence and/or mortality as indicated by publicly available data from the New York State Department of Health [13]. HEs prioritized recruitment of CBOs servicing older community members, such as senior centers, and Black FBOs, where Black men are likely to have strong communal ties [14, 15].

LHN recruitment and training

We modelled our lung cancer navigation after an existing program at our institution that trains culturally- representative navigators to navigate individuals to colonoscopy screening for colorectal cancer [16]. Figure 1 provides an in-depth process map of our navigation program development.

Figure 1.

Process map of program development.

We recruited lay patient navigators, referred to as Lay Health Navigators (LHNs), through our partnership with Brooklyn College Cancer Center, a center dedicated to expanding cancer research and providing educational opportunities to Brooklyn College students [17]. We also posted the position on our department Instagram page and Handshake, a job-listing site for college students. We prioritized volunteers who shared a cultural and/or linguistic background with our focus communities. Two cohorts of LHNs were recruited during our program.

After recruitment, we held two virtual training sessions for LHNs to provide education on their role and responsibilities as navigators and basic cancer knowledge. Training topics included patient navigation as a tool to improve health equity, cancer signs and symptoms, risk factors, screening guidelines, and disparities. In addition, we allotted time during the training for LHNs to practice having conversations with patients by roleplaying with one another.

We administered three surveys to LHNs: a pre-training survey, a post-training survey, and a post-navigation survey. The post-navigation survey was conducted after the cohort ended. These surveys examined whether training materials imparted knowledge about cancer to LHNs, and captured LHNs’ self-evaluated knowledge and confidence. Nine multiple-choice questions tested cancer knowledge, including one specific to lung cancer (e.g. Which of these [cancer types] is the leading cause of cancer-related death in the U.S.?). These questions were based on the evidence-based information used to create the training material and educational content. Self-evaluated cancer knowledge and confidence in assisting others access health services were assessed with one question each using a 5-level Likert scale (i.e. Very Low-Below Average-Average-Above Average-Very High). The multiple-choice knowledge questions only appeared on pre-training and post-training surveys. The post-navigation survey only contained questions on self-evaluated knowledge and confidence. We used paired t-tests to measure changes in these variables.

Patient recruitment and eligibility

To determine community members’ eligibility for LDCT screening, we created digital and physical forms containing questions aligned with the eligibility criteria for LDCT screening as recommended by the United States Preventative Services Task Force (USPSTF): being between 50 and 80 years, having a 20 pack-year smoking history, and currently smoking or having quit within the last 15 years [18]. Forms were available in five languages (English, Spanish, Mandarin, Cantonese, and Russian) relevant to the organization/community. At educational programs, HEs disseminated eligibility forms, answered audience questions, and assisted individuals in completing the form. HEs also noted program attendance numbers at each presentation. HEs then inputted completed forms into REDCap, an electronic data capture resource.

LDCT navigation workflow

LHNs were provided with individuals’ contact information, as provided on completed eligibility forms, and contacted them by either phone or e-mail. LHNs were instructed to call individuals three times to increase chances of making contact. The first conversation between LHNs and community members informed those who were ineligible that they could not be screened through our program or verified answers to eligibility form questions for those who were eligible. Upon eligibility verification, LHNs notified the program team. Our oncology nurse navigator then created the LDCT referral for our referring lung oncologist to approve.

We partnered with our institution’s hospital-based lung cancer screening program, the Early Lung Cancer Action Program (ELCAP), to ensure community members would be screened in a timely manner [19]. Following order creation, the LHN program team informed ELCAP that a patient was ready for scheduling. As LHNs did not possess appropriate medical knowledge nor access to patient medical records, ELCAP managed patient scheduling, shared decision-making conversations with nurse practitioners (NPs), screening, and post-screening follow-up, including active monitoring of suspicious nodules and referral to specialists if needed.

As trusted contacts within the healthcare system, LHNs were responsible for timely follow-up with their patients on the progress of their appointment by calling to confirm appointment dates, communicating assistance needs to the program team, verifying the patient’s attendance at their appointment, and confirming receipt of results following the appointment. LHNs also addressed other patient needs, such as knowledge barriers and fears about screening. LHNs used Excel to keep track of their patients, dates, and times when contact was made, and additional patient needs. Navigation occurred entirely by either phone or email; no in-person contact was made.

Program evaluation

To evaluate program strengths and weaknesses, we collected feedback from LHNs and community members who were successfully screened. All three LHN surveys asked for program feedback. To gather community member feedback, LHNs asked community members to score their level of satisfaction with their navigation experience on a scale of 1 to 5 (‘1 meaning “poor’ and 5 meaning ‘excellent’) and provide comments. Importantly, community feedback was only collected during the second LHN cohort.

Results

Program development modifications

We updated the educational presentation based on community pilot feedback to include information on chronic obstructive pulmonary disease (COPD) due to the increased risk of lung cancer for individuals with COPD [20]. This information emphasized differences between COPD and lung cancer given their similar symptoms and causes and promoted the benefits of LDCT screening as a secondary tool to confirm COPD [21]. Lung cancer was chosen as the content area to evaluate navigation given racial disparities in incidence and mortality; anticipation of the need for lung-specific education, especially for Black men; and identification by our institution’s Community Advisory Board, made up of community stakeholders, as a priority area for community education [8]. To ensure we provided this education to as many communities as possible, presentations were tailored to our other focus communities and languages, with continued emphasis on Black men.

LHN recruitment and training modifications

We decided to recruit more than one cohort of LHNs due to large interest from college applicants, as well as to compensate for the increased number of educational programs being conducted by HEs and for LHNs who left the first cohort after graduation. We included a session during the second cohort’s training on how to handle conversations with patients who informed them of having received abnormal screening results, led by Alison Snow, PhD, LCSW-R, OSW-C.

We initially included colorectal, breast, cervical, and lung cancer in our training materials to align with the cancers already covered by HE educational programs. As our program developed, navigation shifted to focus only on lung cancer to better align the program with funder expectations.

LHN recruitment and training results

We received 87 applications from undergraduate students in NYC and other areas of New York State. Five were selected and trained to be LHNs for the first cohort, and 10 were trained for the second cohort. Table 1 contains demographics of our LHN cohorts. LHNs received monthly gift cards as compensation for their participation, dependent on consistent participation. We also awarded additional gift cards to LHNs who navigated individuals besides those they were assigned to; for example, if they covered for another LHN who did not contact their patient by the assigned deadline.

Table 1.

Demographics of lay health navigators.

	Overall (N = 15)
Race/Ethnicity
Asian	4 (26.7%)
White	4 (26.7%)
Black	3 (20.0%)
Latino	3 (20.0%)
Middle Eastern	1 (6.7%)
Gender
Female	13 (86.7%)
Male	2 (13.3%)

Paired t-test analysis of pre-training, post-training, and post-navigation surveys was conducted with the entire sample of LHNs from both cohorts, excluding two LHNs who did not complete the surveys, totaling a sample size of 13 LHNs. The goal of this analysis was to determine whether LHNs’ objective knowledge, self-evaluated knowledge, and self-evaluated confidence changed following training or application of the information and skills following navigation.

Table 2 shows the mean correct responses for cancer knowledge questions and mean confidence scores observed among LHNs from pre-training to post-training. Post-training mean correct responses was higher than pre-training mean correct responses (eight questions answered correctly versus six questions answered correctly, respectively). There was sufficient evidence to suggest that this observed difference in cancer knowledge was statistically significant (P < 0.01). There was not sufficient evidence to suggest that the observed increase in LHNs’ confidence scores from pre-training to post-training was statistically significant (P = 0.31). However, analysis showed that the post-navigation mean confidence score was higher than the pre-navigation mean confidence score (the average of pre-training and post-training scores): 4.1 versus 3.45, respectively (P < 0.05). Table 3 shows the difference observed in LHNs’ self-evaluated confidence between pre-navigation and post-navigation.

Table 2.

Pre- and post-lay health navigator training survey results (cancer knowledge and confidence) for both cohorts.

	Mean correct responses (% out of 9 total questions)	Mean confidence score (on a scale of 1–5)
Pre-training survey	6 (66.6%)	3.45
Post-training survey	8 (87.5%)	3.8
T-test	3.4	1.0592
P-value	0.004742	0.308793

Table 3.

Pre- versus post-navigation self-evaluation of confidence (helping others access health services) for both cohorts.

	Mean Confidence Score (on a scale of 1–5)
Pre-navigation self-evaluation	3.45
Post-navigation self-evaluation	4.1
T-test	2.50873
P-value	0.030982

In response to post-navigation survey questions that asked LHNs about their experiences with the program, they expressed benefits such as ‘gaining patient care experience’, and ‘encouraging the community through providing information’. In response to a question that asked whether LHNs would recommend the program to others, all 13 responded positively.

Education and navigation program results

From July 2022 to November 2023, we conducted 41 lung cancer education programs across NYC, educating 1966 community members. 28 of these programs were conducted in-person and 13 programs were conducted virtually. Compared to in-person presentations, less eligibility forms were completed at virtual sessions. In response, we implemented a gift card raffle incentive at presentations, which resulted in a slight but negligible improvement in form completion.

During educational presentations, HEs recorded reoccurring audience questions about screening related to environmental exposures other than smoking, how screening ages were determined, why screening guidelines cut off after age 80, and the causes behind increased lung cancer incidence among Black communities. Community members also expressed a gap in knowledge regarding the impact of marijuana, e-cigarette, and hookah usage on lung cancer risk.

As shown in Fig. 2, most community members who attended educational presentations did not complete the eligibility form or provide sufficient contact information (90.9%). Therefore, they could not be navigated. The 179 community members who completed the form were contacted by LHNs. Of these 179 individuals, 88.3% were ineligible for LDCT screening according to USPSTF guidelines. Not having a smoking history was the most common reason for ineligibility (61.5%). The most common reason for ineligibility among those with a smoking history was failure to meet the minimum pack years required (43.9%).

Figure 2.

Lay health navigator program CONSORT diagram.

Twenty community members were confirmed to be eligible for LDCT screening after verification of the eligibility form responses with LHNs. Of these 21 individuals, two individuals paused navigation, opting to resume after the grant ended (9.5%) and seven individuals were either lost to follow-up or refused navigation (33.3%). LHNs successfully navigated 12 individuals to screening (57.1%). Among those successfully screened, LHNs identified six individuals who requested transportation assistance (50.0%) and one individual who did not have health insurance (8.3%). LHNs notified the program team about these needs, and grant funds were used to cover public transportation fares via MetroCards or the cost of screening. Table 4 summarizes demographic information for the 12 screened community members. Out of these 12 individuals, nine identified as belonging to a minority community (75.0%), with six individuals self-identifying as Black (50.0%). Eight of the screened individuals self-identified as female (66.7%) and four identified as male (33.3%). Additionally, six screened individuals self-identified as disabled (50.0%).

Table 4.

Demographics of screened community members.

	Overall (n = 12)
Race *	(n = 11)
Caucasian	4 (36.4%)
Black	7 (63.6%)
Asian or Pacific Islander	0 (0.0%)
American Indian or Alaskan Native	0 (0.0%)
Prefer not to answer	0 (0.0%)
Ethnicity	(n = 12)
Non-Hispanic	9 (75.0%)
Hispanic	3 (25.0%)
Gender	(n = 12)
Female	8 (66.7%)
Male	4 (33.3%)
Non-binary	0 (0.0%)
Transgender	0 (0.0%)
Prefer not to answer	0 (0.0%)
Identification of disability	(n = 12)
Yes	6 (50.0%)
No	5 (41.7%)
Prefer not to answer	1 (8.3%)

^*One respondent did not answer this question.

Although we emphasized outreach to Black men, only 12 of the 79 community members who self-identified as Black/African American and male completed the eligibility form for LDCT screening (15.2%). However, of all 29 self-identified males who answered the form question about race, 41.4% self-identified as Black. Importantly, of the 126 individuals who described their race, 79 self-identified as Black/African American, representing 62.7% of responses. In addition, 65 of the 157 individuals who answered whether they were Hispanic/Latino self-identified as such (41.4% of responses).

Program evaluation

Community members who were successfully screened gave the program an average satisfaction score of 5 out of 5. Accompanying comments included, ‘[navigation] was fast, efficient, and everyone [I] had been in contact with was nice,’ and ‘It was a good experience, and I never knew it was available.’ As we did not collect patient feedback until the second LHN cohort, we only solicited a small sample of community member responses.

Discussion

Through the creation of our lung cancer education and navigation program, we were able to educate at-risk communities about lung cancer and navigate community members to LDCT screening. Through our training of LHNs, we improved their cancer knowledge and confidence in helping individuals access needed health services. We delivered lung cancer education to nearly 2000 community members across NYC and navigated 12 community members to LDCT screening.

Although a small number of individuals were screened through this program (n = 12), we met our objective of navigating community members from underserved communities to LDCT screening. Our results show the feasibility and acceptability of creating quality training materials that can prepare volunteers with little to no professional navigation experience to provide navigation for community members. In addition, having culturally- and linguistically-concordant LHNs who could connect with community members through shared language and culture may have helped reduce healthcare barriers for these individuals. Screened individuals represented different racial/ethnic groups, with 75.0% belonging to a minority community. This was accomplished through targeted collaboration with Black and Latino-focused CBOs and FBOs, especially older adult/senior centers, which provided consistent spaces to host programs for community members and improved access to health information. As community members encounter resources through programs like ours that bridge health educational gaps, they are more likely to be involved in their health [10, 11, 22–24].

Our program’s ability to reach and educate communities of colour throughout NYC adds to the existing literature on the feasibility and acceptability of community outreach programs aimed at providing lung cancer education among minoritized communities. Carter-Bawa et al. found that community members who attended culturally-tailored lung cancer education programs showed increased knowledge of lung cancer and screening, as well as confidence in taking steps about lung cancer screening [25]. Additionally, Williams et al. observed statistically significant decreases among community members for perceived barriers to obtaining LDCT screening and increases in cancer knowledge after attending an educational intervention [26].

We also met our objective to evaluate the impact of lay patient navigation on LHNs and community members. We observed a statistically significant increase in mean correct responses on cancer knowledge questions among LHNs from pre-training and post-training (66.7% versus 87.5%, respectively). This indicates our training materials improved general cancer knowledge in this sample of LHNs. Notably, although LHNs’ confidence scores did not improve from pre-training to post-training, scores improved from pre-navigation to post-navigation. This may be explained by LHNs growing more confident in their abilities once navigation began and they had the opportunity to apply the knowledge and skills gained during training. By interacting with community members, LHNs developed their problem-solving and critical thinking skills to address knowledge and logistic barriers faced by patients. From these experiences, they may have recognized their ability to help others, which in turn boosted their confidence. Regarding impact on community members, we were able to help 12 individuals receive lung cancer screening when they may not have otherwise due to various barriers, such as lack of funds for transportation fare or lack of health insurance. In addition, the high satisfaction scores from patients provides support of the growing literature that patient navigation programs are desired by communities in various areas of healthcare [2, 27, 28]. This project provides support for existing research evaluating feasibility and acceptability for lay navigation programs promoting cancer screening among community members. For instance, similar programs utilization lay patient navigation have shown positive impacts in helping community members receive screening and education about cancer screening [4, 5].

The presence of grant funding and our partnership with our institution’s lung cancer screening program (ELCAP) were important facilitators in the accomplishment of our goals. Grant funding provided coverage for transportation assistance as well as screening costs for patients without health insurance. Our relationship with ELCAP allowed us to easily refer patients to scheduling for screening appointments, meet with NPs, and receive post-screening follow up. Future programs should seek sufficient funding and facilitate a relationship with their institution’s lung cancer screening program to improve program feasibility and success.

Program limitations

The small sample of LHNs in our program (n = 12) limits the generalizability of observed improvements in cancer knowledge scores and self-evaluated confidence. Larger samples may help to improve the validity and replicability of these results. Future programs would also benefit from using validated scales to test cancer knowledge in training LHNs, such as the Cancer Knowledge Scale or the Awareness and Beliefs about Cancer (ABC) measure [29, 30].

The small sample size of screened community members limits the conclusions that can be made from our results. Although we were able to educate nearly 2000 community members, we encountered a limited number of eligible patients (n = 12). Potential factors of influence included community members not meeting the USPSTF eligibility criteria for lung cancer screening (88.3% of completed forms) and the low number of completed eligibility forms (9.1% of attendees). With only one HE present at educational presentations, the limited time to deliver education, distribute eligibility forms, and answer questions may have hindered them from assisting all attendees to accurately complete the form. To reduce this obstacle, greater staff support at presentations to help attendees thoroughly fill out eligibility forms may increase the number of completed forms and subsequently, the number of identified eligible individuals. Future programs should explore methods to encourage completion of eligibility forms among program attendees.

Another challenge faced was loss to follow-up among community members eligible for LDCT screening. 33.3% of eligible individuals were lost to follow up or refused navigation. This may have occurred for various reasons: screening may have been overshadowed by other life priorities, people may have thought the navigation process was too long, or people may have decided against getting screened after completing the eligibility form. Including a detailed explanation of the navigation program in our educational material may have improved community members’ knowledge on what to expect for the navigation process.

As LHNs were responsible for collecting satisfaction data from screened participants, this may have biased the results. Additionally, while screened participants rated the navigation program highly, these results exclude individuals who did not complete navigation. Future programs should seek feedback from participants with different degrees of engagement to gain a better understanding of program strengths and limitations.

As described in the results, there was limited engagement from Black men with this program. As Black men have the highest risk of lung cancer compared to other groups, future programs focusing on this population may benefit from collaborating with organizations like barbershops and men’s ministries, fitness gyms, sports teams, and conferences.

Conclusion

The results of our program support research showing that navigation is a valuable tool for increasing cancer screening and can be delivered by non-healthcare professionals [1–5]. Despite our limitations, we were able to provide education on lung cancer and navigation to LDCT screening for at-risk communities. We also educated and trained student volunteers to conduct this navigation, resulting in improved cancer knowledge and confidence in helping others. LHNs and community members agreed that lay navigation programs like ours benefited the at-risk communities we aimed to serve. This study contributes to existing research evaluating community outreach programs utilizing lay navigation to navigate eligible individuals into cancer screening. Robust funding and institutional support towards navigation efforts that focus on at-risk populations can help to address present disparities and improve equitable healthcare access.

Author contributions

Mikhalya Brown (Data curation, Formal analysis, Investigation, Methodology, Project administration, Software, Visualization, Writing—original draft, Writing—review & editing), Tatiana Ramirez (Data curation, Formal analysis, Investigation, Methodology, Project administration, Visualization, Writing—original draft, Writing—review & editing), Maryam Mohammed-Norgan (Investigation, Project administration, Writing—original draft, Writing—review & editing), Ana Bartolomé (Project administration, Writing—review & editing), Jennifer Basil (Project administration, Writing—review & editing), and Lina Jandorf (Conceptualization, Funding acquisition, Methodology, Project administration, Software, Supervision, Validation, Writing—review & editing)

Conflict of interest: None declared.

Funding

This work was supported by CancerCare [65246641-3] and The Tisch Cancer Institute [P30 CA196521].

Ethics statement

Our project was deemed a quality project by the Multidisciplinary Quality/Performance Improvement Committee in the Division of Haematology/Medical Oncology at Mount Sinai Hospital, and thus an IRB submission was not required.

Data access statement

The data presented in this manuscript is not publicly available.