In Canada, rural populations, especially Low German Mennonite (LGM) communities, constitute a substantial demographic of patients with inborn errors of immunity (IEI), but several interconnected barriers affect their inclusion in Primary Immune Disease Treatment Consortium (PIDTC) studies. Geographic isolation, language and literacy, culture and religion, technology, and logistics are key themes most associated with the involvement of LGM communities in research. LGM communities experience unique barriers stemming from historical experiences of persecution, discrimination, stigma, and fear of judgment, leading to distrust for government and medical systems, and extending to research. LGM culture, religion, and social structure place emphasis on privacy and confidentiality, also influencing engagement with research.
This study aims to characterize barriers and identify facilitators for participation and compliance for rural populations, especially LGM communities in PIDTC studies.
A focus group of PIDTC researchers at the Alberta Children’s Hospital identified key themes to inform a literature review. With few available publications for this population, the literature review will identify key barriers and corresponding facilitators in similar populations and disease groups. These will be validated and expanded through open-ended interviews with an LGM community representative and patient advisory committee. Collaborative thematic analysis will synthesize findings from the literature review and interviews.
This is an ongoing study. A pre-study focus group identified several preliminary themes to guide the pending literature review and interviews. Geographic isolation shapes nearly every aspect of rural healthcare, including access to research. Rural populations depend heavily on local primary care, as long travel distances of up to 8 hours and limited transportation options reduce accessibility to PIDTC research hospitals. This distance translates into fewer opportunities for study visits and sample collection for enrolled patients, resulting in poor compliance and diminished data quality. Many LGM families lack the devices or adequate internet connection for video calls, making real-time telehealth research visits nearly impossible. Low health literacy affects almost half of rural patients, and gender disparities in education, language, and reading skills are common within LGM communities. Limited literacy skills of LGM mothers, who are typically the primary caregivers, are a barrier to informed written consent and meaningful engagement with written questionnaires offered in English, French, or Spanish. Translation services for Low German are not always accessible. Privacy concerns around data sharing, especially across borders, and potential industry involvement in research are other common concerns of LGM families, rooted in distrust for institutions. Differing electronic medical record (EMR) systems between sites limits access to patient information for data collection. In provinces like Alberta, a provincial Epic EMR and unified public laboratory facilitate access to clinical and laboratory data, while public health insurance allows equal access to healthcare facilities.
Rural populations face complex, overlapping barriers to inclusion and compliance in health research, and LGM communities are additionally impacted by unique cultural factors. Implementation of culturally, linguistically, and demographically informed care, community health representatives, flexible consent and questionnaire formats, tailored technology, and logistic solutions can facilitate rural and LGM community representation in research.
