The role of community health workers in a collaborative care management intervention for cancer pain management: a feasibility study for a randomized controlled trial

Introduction

Background

Community health workers (CHWs) are frontline public health workers who are trusted members of the community they serve. CHWs often share demographic, language, or other characteristics with the populations they prioritize. This trust and shared identity enables CHWs to be liaisons between healthcare or social service organizations and the community, thereby facilitating access to resources and enhancing the quality of services delivered (1). CHWs offer numerous services that may include interpretation and translation, culturally tailored health education, or guidance in accessing needed resources (2). Numerous studies have demonstrated that CHWs can successfully link patients to needed services that help mitigate social determinants of health (SDOH) (3-5), improve health outcomes (6-9) and enhance patient self-efficacy (10,11). CHWs can also be cost-effective and valued members of healthcare teams to address patient health needs (12,13).

Rationale and knowledge gap

Research suggests that underserved populations, including Hispanic/Latino and rural dwelling populations, face significant challenges in cancer survivorship (14,15). They struggle with limited access to oncology services and multi-disciplinary providers, clinical trial opportunities as well as travel barriers, persistent pain, and higher rates of cancer-related mortality (16,17). Despite (I) evidence to suggest that CHWs can be trained to support survivorship care for rural dwelling individuals (18); (II) the plausible role of CHWs in helping mitigate these known cancer survivorship disparities (19); and (III) the American Cancer Society’s recommendation that healthcare institutions enhance service integration by collaborating with nonphysician community members to understand and address SDOH and advance cancer health equity (20), few trials have tested the impact of including CHWs in supporting patients with a cancer diagnosis (21) and none have looked at their role in supportive care for cancer-related symptoms.

Achieving Equity through SocioCulturally-informed, Digitally-Enabled Cancer Pain managemeNT (ASCENT) is a National Institutes of Health Helping to End Addiction Long-term Initiative (HEAL)-funded cancer care delivery trial being designed and implemented based on the concept of a digitally-enabled collaborative care, team-based model to treat patients that have historically experienced disparities in cancer pain outcomes, namely Hispanic/Latino and/or rural-dwelling patients. The proposed intervention aims to deliver stepped, patient-centered multi-modal pain care (MMPC) while concurrently addressing SDOH with the support of a CHW plus Nurse or Physical Therapist Pain Care Manager dyad, and regular clinical case management conferences (Figure 1). The intervention parameterized electronic health records (EHR) to systematically align care delivery with patients’ sociocultural, linguistic, digital, and treatment preferences. Patients could opt to communicate via portal, text, email, video meetings, and/or phone calls. These choices were stored as discrete EHR data elements to automate and guide future outreach. The ASCENT intervention requires CHWs to become skilled at EHR-based communication.

Figure 1 ASCENT collaborative care team. ASCENT, Achieving Equity through SocioCulturally-informed, Digitally-Enabled Cancer Pain managemeNT.

Objective

We sought to learn about CHW’s comfort with and how often they perform tasks necessary for ASCENT (e.g., navigating local resources remotely), training needs, and anticipated facilitators and barriers to implementing ASCENT. Our work was guided by Eldridge et al.’s pilot and feasibility studies conceptual framework. Because we asked experts (experienced CHWs) about intervention feasibility, our work falls within the ‘feasibility studies that are not pilot studies’ category (22). Additionally, we examined how anticipated ASCENT barriers and facilitators mapped to the National Institute on Minority Health and Health Disparities (NIMHD) Research Framework (23). This matrix includes domains and levels that influence health. In combination, the domains and levels create 20 cells that each reflect the scope of SDOH that may be relevant to pain disparities experienced by Hispanic/Latino and/or rural-dwelling patients and influence effective implementation. We used this model to organize our thinking around the scale and breadth of the potential factors the CHWs, research team, and healthcare institution would face in ASCENT. Our findings provide a blueprint for modifying the study design, developing intervention materials, and training CHWs to effectively address SDOH factors associated with cancer patient pain. Because a reporting checklist for non-randomized feasibility studies that are not pilot studies does not exist and this research was primarily qualitative, we present this article in accordance with the COREQ reporting checklist (24) (available at https://apm.amegroups.com/article/view/10.21037/apm-24-125/rc).

Methods

Because of the challenges inherent to adapting complex interventions such as ASCENT, pilot and feasibility work preceding a randomized control trial is recommended (25). Specifically, formative qualitative research can help plan for and mitigate trial uncertainties to better optimize interventions (26). Additionally, given the innovations to the CHW role in ASCENT (e.g., virtual format), it is critical to explore how best to integrate CHWs in a way that is feasible without losing the core elements that make CHW interventions effective (e.g., close relationships with patients). Thus, in this article we report mixed methods research using an explanatory sequential design (27) that explores how CHWs can best support rural-dwelling and/or Hispanic/Latino patients diagnosed with cancer who are experiencing pain. We asked experienced CHWs to characterize the feasibility of remote CHWs in supporting rural-dwelling and/or Hispanic/Latino patients with cancer pain management. The study was conducted in accordance with the Declaration of Helsinki (as revised in 2013). The study was approved by the Mayo Clinic Institutional Review Board (No. 23-001838) and informed consent was obtained from all individual participants.

Participant recruitment

We used convenience and snowball sampling to recruit CHWs. The first author (A.M.L.) has collaborated with two of the CHWs on prior work since 2022. One of those participants recruited an additional participant and A.M.L. was introduced to the remaining nine participants through her professional network at the Mayo Clinic. We used this recruitment technique to quickly identify participants. We did not require CHWs to have a certification since this is not a requirement across all states.

To learn contextual details about working as a CHW, we recruited participants either currently employed by or contracted with the Mayo Clinic or working for organizations located in states where the Mayo Clinic or the Mayo Clinic Health Care System resides (Arizona, Florida, Iowa, Minnesota, and Wisconsin). We contacted participants via email. Twelve of the thirteen CHWs we approached agreed to participate in the study. The thirteenth CHW did not reply to our email.

Data collection

Using Research Electronic Data Capture (REDCap) (28,29), we first asked the CHWs to complete a brief questionnaire that included demographics and items written by the research team assessing participants’ comfort in conducting the proposed ASCENT intervention activities and how often they typically performed those activities. The questionnaire included 33 quantitative and 3 qualitative questions and was available in English or Spanish (see Appendix 1). The first author (A.M.L.) then explained that she was an early career investigator conducting formative research to learn from experienced CHWs to enhance ASCENT intervention development. Finally, using narrative methodology to understand CHWs’ experiences, A.M.L. conducted either an individual interview or focus group with participants in their preferred language (English or Spanish) via video conference or in-person. To make data collection more efficient, one CHW team participated in a focus group rather than individual interviews. The last author (J.D.A.) acted as notetaker during the focus group. The semi-structured interview/focus group guide (see Appendix 1) elicited information on prior and future training needs for CHWs, current workflows/responsibilities, and anticipated barriers and facilitators to supporting rural-dwelling and Hispanic/Latino patients diagnosed with cancer. We did not conduct any repeat interviews.

Although the National Cancer Institute’s definition of ‘cancer survivor’ encompasses all patients alive with known or treated cancer (30), outside of academia ‘cancer survivors’ are often seen as people who have completed cancer treatment. Because we were unsure of the participant-CHWs’ familiarity with cancer-related vocabulary, we used ‘patients diagnosed with cancer’ during data collection. Thus, we will use that terminology in this manuscript. Each interview lasted 30–40 minutes and the focus group was 75 minutes. We used Olympus digital voice recorders (DS-30) or video conferencing software to record audio data. All participants received renumeration. Data collection continued until we achieved data saturation (31).

Data analysis

We performed descriptive analysis of survey data. The interviews and the focus group were audio-recorded, transcribed, translated into English when applicable using a Health Insurance Portability and Accountability Act (HIPAA)-certified third-party vendor and analyzed by two team members (A.M.L., J.D.A.). We did not return transcripts to participants for comment or correction. Using Microsoft Excel, we analyzed the interview and focus group data using rapid qualitative analysis (32,33). Rather than producing deep theoretical insights, this pragmatic method identifies or enhances our understanding of key intervention elements, facilitators, and/or barriers in response to time-sensitive research implementation questions (34). We used the matrix method to systematically summarize the data and analyze by case and code (see Appendix 1). We maintained rigor and validity by independently assigning data in the matrix and discussing differences (35,36) and mapped the identified barriers to the NIMHD Research Framework. We shared a summary of our findings as well as a draft of this manuscript with participants via email and incorporated their feedback.

Research team reflexivity

AL learned Spanish in school and abroad. She identifies as a non-Hispanic White woman born in the United States (US), holds a PhD in health promotion and behavioral sciences, has extensive experience and training in qualitative research methodologies, and is currently research faculty at the Mayo Clinic. None of the authors are cancer survivors but all have experience collaborating with the rural-dwelling and/or Hispanic/Latino communities including work on past cancer research projects.

Results

Survey findings

We received 12 completed surveys from participant-CHWs in Minnesota and Florida (100% response rate). On average, participant-CHWs were 44 years old [standard deviation (SD) =10], and 92% identified as female. Less than half were born in the US (42%) and the majority identified as Hispanic/Latino (67%). The average time working as a CHW was 7 years. Many participant-CHWs were employed by multiple organizations with 58% working for a hospital or clinic, 42% working for non-profit organizations, and 17% working for a state or county health department. Over half were employees or contractors with the Mayo Clinic (58%). The participant-CHWs conduct most of their work in person (78%) while about 22% of their time is dedicated to working with clients online (Table 1).

Feasibility of proposed CHW role

In ASCENT, we are asking CHWs to assess and address SDOH-related barriers to receipt of recommended pain care among rural-dwelling and/or Hispanic/Latino patients diagnosed with cancer. They are additionally asked to present SDOH issues during case management conferences with clinicians. To better understand participant-CHWs’ current experience and the perceived feasibility of this role, we asked how often they work with the ASCENT priority populations and their comfort performing intervention tasks.

Most of the participant-CHWs (67%) work with Hispanic/Latino patients while less than half (42%) work with rural-dwelling patients daily. The frequency that they reported working with patients diagnosed with cancer was mixed: 8% each responded, ‘every day’ and ‘never’, 25% each stated ‘once or twice a year’ and ‘once a week’, and 33% answered ‘once a month’ (Figure 2).

Figure 2 The frequency community health worker participants reported working with rural dwelling and Hispanic/Latino patients and patients diagnosed with cancer.

All participant-CHWs reported that they were ‘comfortable’ or ‘very comfortable’ working with a healthcare team to help patients with cancer manage their pain. Most respondents (92%) stated they were comfortable working as CHWs with patients diagnosed with cancer and working with digital technologies like video conferencing software. Three-quarters of the participant-CHWs reported feeling comfortable working with patients remotely, working with EHRs, and working with patients online who live in an unfamiliar geographic area (Figure 3).

Figure 3 Community health worker participants’ comfort performing tasks necessary for the ASCENT trial (n=12). CHW, community health worker; ASCENT, Achieving Equity through SocioCulturally-informed, Digitally-Enabled Cancer Pain managemeNT.

Anticipated barriers to ASCENT implementation

We conducted eight individual interviews and one focus group with four participants. The team categorized data into five groups that align with the NIMHD Research Framework. We listed the NIMHD Research Framework domain(s) and level(s) and SDOH in parentheses below.

Working remotely in an unfamiliar geographic area

Although our survey results showed that participant-CHWs were comfortable working with patients remotely or in unfamiliar geographic areas, during qualitative data collection they identified barriers. The participant-CHWs reported that it would be challenging to build trust when they were not familiar with the patient’s location, local resources, or preferences (physical/built environment/community: community resources). They also acknowledged that not being physically present with patients would hinder their ability to develop personal relationships. The participant-CHWs stated that patients often want face-to-face interactions and appreciate when CHWs conduct home visits. In turn, home visits are a way for CHWs to learn about the patient’s life (healthcare system/interpersonal: patient-CHW relationship).

Resource availability

The participant-CHWs highlighted challenges around helping patients with limited access to resources. They discussed that rural-dwelling individuals may experience challenges with transportation and/or have limited options for accessing resources (e.g., speciality care) (physical/built environment/community: community resources). The participant-CHWs also described challenges experienced by individuals without legal citizenship or residency status who do not qualify for many resources. Consequently, a cancer diagnosis can not only mean physical but also financial and psychological pain around decisions to return to their countries of origin. One participant-CHW even described her organization’s lack of trust in specific rural providers due to an unwillingness to serve individuals without legal citizenship or residency status (sociocultural environment/societal: societal structural discrimination).

Technology

The participant-CHWs reported patients’ lack of internet connection, computer, or cell phone as well as low digital literacy and hearing loss as potential barriers to CHWs’ working remotely with Hispanic or rural-dwelling patients (physical/built environment/individual: personal environment; healthcare system/individual: health literacy; biological/individual: biological vulnerability and mechanisms). For speakers of languages other than English, the participant-CHWs also identified automated phone messages delivered in English as a barrier to accessing healthcare. They anticipated that it could be challenging to schedule appointments from a distance (by phone or video chat instead of in-person) (healthcare system/community: availability of health services).

Implementation-specific challenges

We asked participant-CHWs to reflect on potential barriers to implementing a collaborative care model to improve pain management. If the ASCENT CHWs do not share patients’ cultural background and/or are not bilingual, participant-CHWs anticipated struggles to build trust (sociocultural environment/individual: cultural identity). We also asked participant-CHWs to reflect on situations that were outside CHWs’ scope of practice. They described the following tasks as beyond their scope: completing specific forms (e.g., disability applications), answering medical questions (about diagnosis, medications, lab results, or nutrition), and transporting patients in their own vehicles. When asked how they managed these tasks, the participant-CHWs reported seeking help from their supervisor, a patient’s care team, or other experts, as well as clarifying their role.

While most participant-CHWs work with healthcare professionals in teams, many described common misconceptions healthcare professionals and patients have about CHWs. While some healthcare professionals may think that CHWs are not valuable members of healthcare teams, both patients and healthcare professionals confuse the CHW role, thinking of them as language interpreters, social workers, or—in the case of patients—medical providers (healthcare system/individual: health literacy). The participant-CHWs were also concerned that the CHWs may hesitate to ask for help if they feel like a burden to the healthcare team (healthcare system/interpersonal: cross-disciplinary relationships). Additionally, the participant-CHWs were concerned about having insufficient time dedicated to each patient, especially if diagnosed with advanced cancer (healthcare system/societal: quality of care).

Patient-level factors

The participant-CHWs identified several patient-level factors that could hinder efforts to improve pain management for Hispanic and/or rural-dwelling patients diagnosed with cancer.

• Patients’ experience with pain and co-occurring symptoms: participant-CHWs discussed how depression can cause patients to lose motivation for life, negative treatment side effects (e.g., lack of desire to eat) which may lead patients to stop taking medications, or disconnection from social life (biological/individual: biological vulnerability and mechanisms).
• Means of delivery: participant-CHWs worried that repetitive questionnaires would be bothersome for patients especially when they feel sick (behavioral/individual: health behaviors and coping strategies).
• Sociocultural factors: one CHW described the challenges of working with patients with racist beliefs which manifested as a desire to only work with CHWs of a certain race (sociocultural environment/interpersonal: interpersonal discrimination) (note: Mayo Clinic prohibits discrimination on the basis of race, color, creed, religion, gender, sexual orientation, gender identity or expression, national origin, age, disability or any other personal attribute from any patient or visitor). Another CHW brought up cultural stigmas surrounding people diagnosed with cancer—such as the idea that they will die imminently—and how these beliefs can negatively impact patients (sociocultural environment/societal: societal norms) (Figure 4).

Figure 4 Mapping the barriers to implementing a collaborative care model to improve pain symptom management to an adapted version of the National Institute of Minority Health and Health Disparities Research Framework. ^†, the NIMHD Research Framework includes example determinants within each cell (bolded text). These examples are not intended to be exhaustive, thus in two cases we adapted the examples to better fit our results (e.g., instead of ‘patient-clinician relationship’ we used ‘patient-CHW relationship’ and added ‘cross-disciplinary relationships’). We underlined the determinants represented in our data. NIMHD, the National Institute on Minority Health and Health Disparities; CHW, community health worker.

Recommendations for including CHWs in collaborative care models with interdisciplinary care teams

To facilitate the inclusion of CHWs in collaborative care teams as in the ASCENT intervention, the participant-CHWs made the following recommendations.

CHW training needs

Team leadership should train CHWs on the geographic area served, how to effectively complete aid applications, disease specific information, basic first aid and comfort, data collection procedures, and mental health.

Recruitment and retention

Team leadership should ensure that language interpretation matches patients’ country or region of origin and that patients always work with the same CHW and interpreter, include comfort communicating online in the patient eligibility criteria, and include home visits and/or provide transportation for CHWs or patients to visit.

Implementation (by role)

CHWs:

• Research local resources.
• Educate patients about the CHW role and scope of practice and basic cancer information.
• Ensure patients understand study and care plan.
• Be accessible, flexible, empathetic, and reliable.
• Listen and provide emotional support.
• Share new information gathered outside provider appointments with care team.
• Navigate cultural barriers and strive to integrate culture, family, and patient needs.

Team leadership:

• Hire CHWs who love their job and are dedicated to helping patients.
• Trust and empower CHWs to do their work.
• Educate providers about CHW scope of practice.
• Clearly delineate social worker, interpreter, and CHW roles.
• Establish bidirectional communication expectations and identify a point of contact who is available for CHW questions.
• Include CHWs in care consults.
• Ensure that CHWs have scheduling support or sufficient time set aside for follow-up.
• Avoid setting overly high expectations regarding CHWs’ ability to find and help patients access resources.

Healthcare institution:

• Provide technological support for patients.
• Hire more providers from health disparity populations (Table 2).

Discussion

We discuss the feasibility of integrating CHWs as members of a collaborative care team for pain management to support rural-dwelling and/or Hispanic/Latino patients diagnosed with cancer experiencing clinically significant pain via digitally enabled means. We found that, with proper support and training, CHWs would feel comfortable working as members of an interdisciplinary collaborative care team for cancer pain management. The participant-CHWs also identified barriers and facilitators to ASCENT implementation which we categorized into five groups (working remotely in an unfamiliar geographic area, resource availability, technology, implementation-specific challenges, and patient-level factors) and mapped them to the NIMHD Research Framework.

Most barriers and facilitators were within the healthcare system domain and/or at the individual level. Thus, our mapping of the results indicates that, to feasibly integrate CHWs in collaborative care teams for pain management, the CHWs, medical team, and healthcare institutions need to strive to address issues at all levels. Our results suggest that these changes could lead to the successful implementation of a collaborative care model that includes CHWs and improves pain management for Hispanic/Latino and/or rural-dwelling patients diagnosed with cancer.

Some of the identified challenges will be difficult to tackle including CHWs managing patients remotely through digital means. Our findings suggest this is feasible, but potential barriers include digital access, literacy, and challenges with establishing rapport between CHWs and patients. However, there is also an opportunity for CHWs to access more patients across large geographic areas and dispersed niche populations that would be impractical to reach in-person—a topic that could be further explored in the future using a decentralized clinical trial.

Our data contradicted itself in one interesting way. Few of the CHW participants reported regularly working with patients with cancer (>60% were once per month or less) yet all had confidence working with a healthcare team to help patients manage their cancer pain. These findings may mean that CHWs believe their skills can be successfully applied in the context of many health issues including cancer survivorship care.

The CHW tasks that would facilitate the ASCENT study suggested by the participants aligns with the National Council on CHW Core Consensus (C3) Standards. For example, participants suggested that ASCENT CHWs should ensure patients understand study and care plans which falls under role 2: “providing culturally appropriate health education and information”. Also, their suggestion to hire CHWs who are dedicated to helping the community is in line with the C3 finding that ‘connection to the community served’ is the most critical quality (37). In the future, more research is needed on how the tasks performed by CHWs working in cancer care compare to the C3 Standards.

Our finding that CHWs have the potential to be part of a collaborative care team to support pain management is similar to other research. In two qualitative studies examining CHWs’ and healthcare professionals’ perspectives on a CHW-led advance care planning (ACP) and cancer symptom screening intervention, researchers found that healthcare professionals deemed the intervention as an acceptable, effective, necessary part of cancer care and CHWs felt they served a crucial healthcare team role (38). The healthcare professionals stressed the importance of CHW training, integrating CHWs as valued team members, and addressing retention to sustain complex interventions (39). Yet the CHWs described needing time to develop trusting relationships with patients, ongoing training on how to discuss sensitive topics (e.g., cancer symptoms), and social and emotional support. They also found that communication between the CHWs and the oncology team could be challenging and that power differentials impeded high quality care delivery (38). The participant-CHWs in our study also identified these factors as potential barriers, reinforcing the need to proactively address these issues in ASCENT.

Initial time and resource investments to address these barriers so that CHWs feel comfortable and supported working with patients with cancer pain as part of a collaborative care model may not only provide substantial patient benefit, but also reduce healthcare resource utilization and costs. For instance, the Patient Care Connect Program (PCCP) prioritized older Medicare beneficiaries with cancer and aimed to improve healthcare and lower costs by integrating patient navigators into care teams (40). Researchers observed significant reductions in resource use and costs (e.g., hospitalizations) for PCCP compared to matched non-navigated patients. They estimated the PCCP had a potential 1:10 return on investment which could further justify the sustainability of such interventions (41).

Strengths and limitations

Strengths of this work are our inclusion of the perspectives of experienced CHWs. The participant-CHWs applied their extensive knowledge of the field and provided critical insights. Also, the use of mixed-methods design facilitated a deeper understanding with actionable solutions. Because ASCENT will be implemented in facilities with broad catchment areas in four states, we strove to recruit across the Mayo Clinic enterprise. Unfortunately, we were only able to recruit participant-CHWs in Florida and Minnesota. Our findings should be considered within this context. Additionally, our small sample size limits the generalizability of our findings. Our results do not represent the entire spectrum of experiences or perspectives. Additionally, rapid qualitative analysis has inherent limitations including lack of depth in interpretation and potential researcher bias (42). Finally, the survey and interview/focus group questions were not informed by a specific theory or model and was limited to understanding the feasibility of delivering key elements of the intervention. However, we utilized the NIMHD Research Framework to organize our findings.

Conclusions

CHW interventions are effective at improving outcomes such as cancer screening and health behaviors. Our findings suggest that CHWs can also contribute in meaningful ways to supporting patients diagnosed with cancer as members of a collaborative care team to manage pain remotely, but more research is needed to understand the relative effect compared to collaborative care models alone. As CHWs become more integrated into care teams, we encourage policy makers to expand CHW reimbursement models to include cancer survivorship.

Acknowledgments

We would like to thank Jennifer Quiring for her assistance in coordinating the focus group described in this paper as well as the participant-CHWs for their willingness to share their knowledge and expertise as well as the important role they play in our communities.

Funding: This work was supported by the National Cancer Institute (No. R61CA278594). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Footnote

Reporting Checklist: The authors have completed the COREQ reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-24-125/rc

Data Sharing Statement: Available at https://apm.amegroups.com/article/view/10.21037/apm-24-125/dss

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-24-125/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-24-125/coif). All authors report support from the National Cancer Institute (NCI) (No. R61CA278594). A.M.L. also reports additional grant support from the National Institute on Minority Health and Health Disparities (NIMHD), the National Center for Advancing Translational Sciences, and the National Institute of Diabetes and Digestive and Kidney Diseases. A.M.L. received honoraria for a presentation at the Institute for Excellence in Health Equity at the NYU Langone Health in September 2023. J.M.G. receives additional grant funding from NCI, the National Institute on Aging, the National Institute on Nursing Research, and Exact Sciences. J.D.A. reports additional support from grants from NCI, the Mayo Clinic, NIMHD, and the Radiology Society of North America. She reports receiving honoraria for her Steering Committee role and payment to present at the annual meeting for the National Institutes of Health Consortium for Cancer Implementation Science. The authors have no other conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. The study was conducted in accordance with the Declaration of Helsinki (as revised in 2013). The study was approved by the Mayo Clinic Institutional Review Board (No. 23-001838) and informed consent was obtained from all individual participants.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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