Feasibility of an environmental scan–based approach to collecting information about factors impacting cancer genetics services in Latin American countries

Abstract

Objective

Clinical cancer genetics services are expanding globally, but national policy and health care systems influence availability and implementation. Understanding the environmental factors within a country is required to appropriately implement, adapt, and evaluate cancer genetics service delivery models. An environmental scan (ES) is an approach used in business, public health, health care and other sectors to collect information about an environment or system for strategic decision making and program planning. An ES has been previously used to assess cancer genetics clinic-level factors to inform quality improvement efforts in the United States. We assessed the feasibility of using an ES to collect information about factors that may influence cancer genetics service delivery in the outer-most socio-ecological model environmental levels (policy, national agencies, healthcare systems, cultural considerations) in three Latin American countries.

Methods

Oncology and Genetics care team members at three participating sites used publicly available sources and personal experiences to complete a data collection form (DCF) that included questions about subtopics: laws and policies, relevant agencies and regulations, health care systems and insurance, and cultural considerations. Time to complete the DCF and DCF completeness were used to measure ES feasibility.

Results

Participating sites completed the DCF in 3 months, and most questions (average, 87.0%) were answered. Questions in the cultural considerations subtopic had the fewest answers (average, 77.8%).

Conclusions

Overall, the ES was feasible and identified a lack of published literature related to cultural considerations impacting health care and genetics services uptake in Latin America. Environmental factors impact cancer genetics services, and identification of these factors will facilitate future collaborative research and genetics service delivery dissemination efforts.

Supplementary Information

The online version contains supplementary material available at 10.1007/s12687-024-00744-5.

Introduction

Cancer genetics services, including genetic counseling and germline genetic testing, are growing globally, with more than 7000 practicing genetic counselors across at least 28 countries in 2018 (Abacan et al. 2019; Ormond et al. 2018). Oncology care guidelines recommend germline genetic testing for patients with cancer, and individuals worldwide undergo genetic testing, albeit with region- and country-level variations (Kozak et al. 2022; Marmolejo et al. 2021; World Health 2011a; Yip et al. 2019). Increasingly, genetic testing results are used to inform therapy planning, personalized cancer treatments, and clinical trial participation, as is the case for patients with gynecologic cancers such as epithelial ovarian cancer and endometrial cancer, further supporting the expansion of cancer genetics services (Alldredge and Randall 2019).

All countries have environmental factors that contribute to variation in the delivery of cancer genetics services, including genetics workforce constraints, genetic testing laboratory availability, testing capacity and costs, national and local policies (i.e., health information privacy laws), health care system structures (i.e., health insurance and payer systems), societal and cultural values and norms, clinical systems, and interpersonal considerations (i.e., patient concerns about discrimination) (Delikurt et al. 2015; Dragojlovic et al. 2021; Dusic et al. 2022; Modell et al. 2021; Ormond et al. 2018; World Health 2011b; Yip et al. 2019). Socio-ecological models, which researchers have applied to understanding clinical trial enrollment, cancer screenings, and other health behaviors, can stratify numerous, complex environmental factors into intrapersonal, interpersonal, organizational or community, societal and cultural, and policy levels (Daley et al. 2011; Salihu et al. 2015; Scarneo et al. 2019).

Identification and stratification of environmental factors influencing the availability and delivery of cancer genetics services can inform decisions about service delivery model implementation, intervention adaptations, quality and process improvement efforts, and research. Various interventions and alternative service delivery models to improve patient access to and uptake of guideline-recommended cancer genetics services have been reported (Bednar et al. 2022; O'Shea et al. 2021). However, successful implementation of these interventions and service delivery models depends on the careful consideration and integration of environmental factors present at a given clinic location into program planning, implementation, and evaluation. In seeking to understand environmental factors, gaps in the literature, policies, or available resources may be identified, which could pose ethical, legal, social, and health disparity risks to communities if cancer genetics programs are implemented without first ensuring protections and support for patients and families (Prince 2018; Zhong et al. 2021).

Few tools are designed specifically for the collection and stratification of environmental factors. One approach is the use of an environmental scan (ES), whereby information on environmental factors is collected and synthesized to inform decision-making, future initiatives, policies, and strategies (Rowel et al. 2005). An ES was previously used to assess cancer genetics services in United States-based oncology clinics, however it focused on hospital and clinic level factors and did not collect information about factors present at the national level such as laws, policies, health care system structures, or societal and cultural values and norms (Bednar et al. 2018). We sought to determine the feasibility of using an ES to collect information about outer-most socio-ecological model environmental levels’ factors related to cancer genetics services in three different Latin American countries. To this end, an ES was developed by a United States–based team (lead site) composed of gynecologic oncology physicians, a genetic counselor, and research staff (E.M.B, R.N.W., K.J., J.A.R.-H.), and then implemented in collaboration with participating site teams, composed of gynecologic oncologists and geneticists in Brazil (L.N., A.P.S.D.S., G.S.O., C.E.M.C.A.), Peru (N.P.-R., P.M., A.L.), and Mexico (L.N.G.-A., D.C.-L.).

Methods

The lead site team developed a data collection form (DCF) (Online Resource 1) with questions informed by the literature and prior environmental scan efforts (Bednar et al. 2018), subdivided by outer-most socio-ecological model environmental level subtopics: national/regional laws and policies, agencies and regulations, health care delivery and insurance, public health functions, professional organizations, education and training, and cultural considerations (Fig. 1). The DCF comprised 169 free-response questions consisting of 10 open-ended, 49 closed-ended, and 110 conditional questions to clarify the leading open- or closed-ended question (e.g., if yes, then…) and a column for citations.

Fig. 1.

Socio-Ecological Model and Data Collection Form Subtopics. Arrows indicate the bi-directional influence of factors across each of the layers. Figure adapted from Scarneo et al. (2019) The Socioecological Framework: A Multifaceted Approach to Preventing Sport-Related Deaths in High School Sports J Athl Train 54:356-360 doi:10.4085/1062-6050-173-18

Participating sites and their respective team members were identified from an existing network of collaborating institutions, had prior research collaborations with the lead site team physicians, active cancer genetics clinical services at the site, and expressed interest in participating in the ES (Uschold 2019). Each participating site team joined in virtual project planning meetings with the lead site team (once in July 2019 and once in August 2019), hosted a project “kick-off” site-visit and in-person discussion of DCF subtopics to ensure content areas were appropriate in September 2019, and then located and cited publicly available information (e.g., websites and publications) and leveraged their knowledge and experiences to complete the DCF beginning in October 2019. A DCF check-in virtual meeting was conducted with each participating site in December 2019, and a post-DCF submission virtual meeting was conducted with each participating site in January 2020. Email correspondence between the lead site team and participating site teams primarily served to coordinate each meeting and sharing of the DCF document.

We measured ES feasibility using the time to complete the DCF and DCF completeness. Time to complete the DCF was determined by the distribution and return dates of the DCF as noted in project meeting notes and email correspondence. The lead site team expected DCF completion by all three participating sites by December 31, 2019. Completeness was assessed using the number of questions answered, number of answers with a citation, and length of answers scored on a scale from zero (no response) to three (more than one sentence); calculated using descriptive statistics. Project meeting notes and email correspondence were reviewed for participating site team member’s feedback on the ES project process. The ES project plan, including the DCF, was reviewed by the lead site’s Department of Gynecologic Oncology and Reproductive Medicine research faculty and IRB review was waived because this is neither a research nor quality improvement study and did not require patients, animal subjects or protected health information.

Results

Participating sites teams completed the DCF in 3 months (October 2019 to January 2020). On average, participants answered 147 (87.0%) questions (Table 1). The professional organizations and public health functions subtopics had the most answered questions (100.0% and 96.3%, respectively), whereas the cultural considerations subtopic had the fewest (77.8%). Only four questions, all from the health care delivery and insurance subtopic, were unanswered by all three site teams but they were conditional questions, whereby non-response could be appropriate depending on the answer to the leading question. About a quarter of the questions (overall, 24.7%; and 28.3% of those answered) had at least one citation provided. The health care delivery and insurance subtopic had the fewest citations provided per question.

Table 1.

Environmental scan (ES) questions and responses by participating site^a

	n					Average completeness score (n = 0-3)b
Environment level–topic area	Questions by type	Conditional questions by type	Total questions	Answered questions	Answers with citation(s)
National/regional laws and policies	Closed-ended: 9 Open-ended: 1	Closed-ended: 34 Open-ended: 0	44	Site 1: 44 Site 2: 27 Site 3: 43	Site 1: 12 Site 2: 11 Site 3: 10	Site 1: 1.7 Site 2: 0.9 Site 3: 1.5
Agencies and regulations	Closed-ended: 4 Open-ended: 0	Closed-ended: 10 Open-ended: 0	14	Site 1: 12 Site 2: 11 Site 3: 14	Site 1: 4 Site 2: 1 Site 3: 4	Site 1: 1.5 Site 2: 1.2 Site 3: 1.3
Health care delivery and insurance	Closed-ended: 9 Open-ended: 8	Closed-ended: 20 Open-ended: 11	48	Site 1: 42 Site 2: 38 Site 3: 44	Site 1: 12 Site 2: 6 Site 3: 5	Site 1: 1.8 Site 2: 1.6 Site 3: 1.6
Public health functions	Closed-ended: 8 Open-ended: 0	Closed-ended: 19 Open-ended: 0	27	Site 1: 27 Site 2: 25 Site 3: 26	Site 1: 12 Site 2: 6 Site 3: 7	Site 1: 2.0 Site 2: 1.4 Site 3: 1.2
Professional organizations	Closed-ended: 5 Open-ended: 0	Closed-ended: 0 Open-ended: 0	5	Site 1: 5 Site 2: 5 Site 3: 5	Site 1: 5 Site 2: 2 Site 3: 0	Site 1: 1.4 Site 2: 1.6 Site 3: 1.0
Education and training	Closed-ended: 1 Open-ended: 1	Closed-ended: 1 Open-ended: 4	7	Site 1: 7 Site 2: 6 Site 3: 4	Site 1: 6 Site 2: 2 Site 3: 1	Site 1: 2.3 Site 2: 1.0 Site 3: 0.7
Cultural considerations	Closed-ended: 13 Open-ended: 0	Closed-ended: 11 Open-ended: 0	24	Site 1: 24 Site 2: 17 Site 3: 15	Site 1: 16 Site 2: 3 Site 3: 0	Site 1: 2.1 Site 2: 0.8 Site 3: 0.7
All topic areas	Closed-ended: 49 Open-ended: 10	Closed-ended: 95 Open-ended: 15	169	Site 1: 161 Site 2: 129 Site 3: 151	Site 1: 67 Site 2: 31 Site 3: 27	Site 1: 1.8 Site 2: 1.2 Site 3: 1.3

^a Participating sites were assigned numbers in the order of their project start date

^b A score of 0 indicates no response, 1 indicates single-word or number response, 2 indicates a brief phrase or single-sentence response, and 3 indicates multiple-sentence response

Most answers were concise, with average answer scores ranging from 1.2 to 1.8, indicating mostly single-word or numeric answers (score of 1) or brief phrases or a sentence (score of 2). Answers in the cultural considerations subtopic were shorter, with a lower average completeness score, than those in other subtopics.

Site teams provided feedback on the ES project process which included encountering some challenges to completing the ES primarily due to competing demands on team member’s time and difficulty locating published information for some DCF subtopic questions. Some DCF questions and answers required clarification during project meetings. Having time and staffing resources, a commitment to the project, and interest in the topic and future collaborative work all supported site teams’ completion of the ES.

Discussion

The ES approach using the DCF was considered feasible, as indicated by the completion time (3 months) required for a free response survey of 169 questions, and the high average number of completed questions (87.0%). Additionally, the DCF was completed by all three participating sites within the lead site team’s anticipated timeline. The cultural consideration subtopic questions had the briefest responses and lowest average number of questions answered. This subtopic asked for country-specific information on patient and family health information communication practices, the impact of cultural and religious factors on community members’ receipt of health care and cancer genetics services, and populations facing discrimination or encountering disparities in health care outcomes. Participants reported difficulties answering these questions due to finding a very limited number of studies published on these topics within their respective countries, which indicates a gap in the literature and an area for future collaborative research. Cultural and societal level environmental factors may influence the communities’ awareness and perceived acceptability of cancer genetics services, and this knowledge can inform patient-centered approaches to providing cancer genetics services.

Data collection forms have been used in other published ES studies to assess health care service delivery systems; however, these prior ES studies have focused on Canadian, United States, and Australian clinical environments, and majority have not focused on cancer genetics related factors (Charlton et al. 2021). A previously described ES was developed to assess factors that may influence the delivery of cancer genetics services at oncology care centers in the United States, and similarly used a data collection form composed of questions grouped by subtopics that could be answered with brief, free-text responses (Bednar et al. 2018). This prior ES study focused on inner-levels of the socio-ecological model (intrapersonal, interpersonal, organizational factors at the hospital and clinic level), had fewer questions (n=130), a similar proportion of unanswerable questions (12-20 of 130), did not request references or citations which may in part have resulted in the shorter time to complete (average of 25 days) as compared to the ES presented in this study.

Prior studies have identified the ES process as flexible, efficient, and adaptable to a variety of topics and useful for identifying opportunities for future action and strategic planning (Rowel et al. 2005). The ES process described in this study aligned with these features, however, ESs have limitations, notably the lack of consensus on their design and methodology (Charlton et al. 2021). Additionally, because the lead site team created the DCF questions, phrasing or applicability in international health care environments may have impacted responses, and other relevant environmental factors present in Latin American environments may not have been sufficiently assessed. We did not analyze the content of the DCF answers for this study; however, responses will provide context for future evaluations of participating sites’ cancer genetics clinic workflows and planning of future collaborative efforts.

Identifying the status of environmental factors that influence cancer genetics service availability and delivery provides crucial contextual information when developing cancer genetics programs, research initiatives, intervention implementation plans, and novel service delivery approaches in diverse, global settings. Implementation science frameworks, such as the Practical, Robust Implementation and Sustainability Model (PRISM) integrate external, environmental context into the pragmatic planning, design, and implementation of programs and interventions (Trinkley et al. 2023). Various cancer genetics alternate service delivery models such as telegenetics, group genetic counseling, and mainstreaming, and unique pathways to leverage both germline and somatic genetic testing as in the FLABRA trial, are proposed to enhance the delivery of cancer genetics services to patients with gynecologic and other cancers (Buchanan et al. 2016; Czekalski et al. 2022; Giornelli et al. 2021). These service delivery models, and their outcomes, are often reported without acknowledgement of the contextual or environmental factors that are known to influence the delivery of cancer genetics service, such as the available genetics workforce, genetic testing availability and costs, regulations and laws, health care system and insurance structures, societal and cultural values and norms of patients. There are opportunities to apply implementation science frameworks and to report the relevant environmental factors when designing and evaluating new cancer genetics service delivery models and pathways. Collection and reporting of information about environmental factors can support the dissemination of genetics service delivery models and clinical interventions to new clinical settings, because it can allow clinical teams to identify similarities and differences within their own environments to better navigate potential barriers and facilitators to implementation and to ensure appropriateness for their clinical context and patient population characteristics. While the DCF used in this study may serve as a template for collection of the outer-most socio-ecological model environmental level factors, opportunities exist to develop validated tools for collecting information about environmental factors that may influence cancer genetics services across various international and domestic clinical settings.

Conclusions

Overall, the ES was a feasible approach to collect information about the outer-most socio-ecological model environmental factors that may impact cancer genetics services in three Latin American countries. The ES data collection form (DCF) may serve as a template for collecting this information in other countries or clinical settings. Evaluation of the completed ES data collection forms identified a gap in the literature related to cultural considerations impacting health care and genetics services uptake in Latin America, representing an opportunity for future, collaborative research whereby results may guide clinical practice to best support patients with cancer and their families.

Author contribution

All authors contributed substantially to the design, implementation, and analysis of the study. E.M.B., R.N.W., K.J., and J.A.R.-H. confirm that they had full access to all the study data and take responsibility for the integrity of the data and the accuracy of the data analysis. All authors gave final approval for the publication of this manuscript version and agree to be 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. E.M.B., M.T.W., C.E.M.C.A., P.M., A.L., D.C.-L., and J.A.R.-H. created the study concept and methodology and provided project administration. J.A.R.-H. obtained funding. Investigation and data curation: E.M.B., R.N.W., K.J., L.N., N.P., and L.N.G.-A. collected and curated data. E.M.B. analyzed the data and wrote the original draft, and all authors reviewed and edited the article.

Data availability

Data are available upon reasonable request and per appropriate data use agreement policies.

Declarations

Compliance with ethical standards

IRB review was waived because this study is neither a research nor quality improvement study and did not require patients’ participation, animal subjects, or protected health information.

Competing interests

The following authors declare no competing interests: E.M.B, R.N.W., K.J., M.T.W., S.N., K.H.L, L.N., A.P.S.D.S., G.S.O., C.E.M.C.A., N.P.-R., P.M., A.L., L.N.G.-A., D.C.-L.

J.A.R.-H. reports consulting fees from Guidepoint Consulting and Schlesinger Group.