Partnering with First Nations in Northern British Columbia Canada to Reduce Inequity in Access to Genomic Research.

Indigenous-led, culturally safe health research and infrastructure are essential to address existing inequities and disparities for Indigenous Peoples globally. Biobanking, genomic research, and self-governance could reduce the existing divide and increase Indigenous participation in health research. While genomic research advances medicine, barriers persist for Indigenous patients to benefit. In northern BC, Canada, the Northern Biobank Initiative (NBI), with guidance from a Northern First Nations Biobank Advisory Committee (NFNBAC), has engaged in consultations with First Nations on biobanking and genomic research. Key informant interviews and focus groups conducted with First Nations leaders, Elders, Knowledge Keepers, and community members established culturally safe ways of biobanking and exploring genomic research. Strong support for a Northern British Columbia First Nations Biobank (NBCFNB) that will promote choice, inclusion, and access to health research opportunities emerged. The acceptance and enthusiasm for the development of this NBCFNB and its governance table highlight the shift towards Indigenous ownership and support of health research and its benefits. With engagement and partnership, community awareness, multigenerational involvement, and support from diverse and experienced healthcare leaders, the NBCFNB will establish this culturally safe, locally driven, and critically important research priority that may serve as an example for diverse Indigenous groups when designing their unique biobanking or genomic research opportunities.

Indigenous Men Adhering to Highly Active Antiretroviral Therapy: Navigating Through Culturally Unsafe Spaces While Caring for Their Health.

Introduction: Indigenous peoples in Canada have endured and continue to experience the impact of colonization by European settlers. The deleterious manifestations of intergenerational historic trauma (HT) are evidenced in the high HIV/AIDS epidemic-related premature mortality rates among Indigenous men, despite the availability of novel highly active antiretroviral therapies (HAARTs). Aim: The aims of this study were to explore the impact of historic trauma (HT) on treatment adherence and health promoting practices among Indigenous men living with HIV, and how resilience was both expressed and mediated by survivor status. Methods: This interpretive description study incorporated a cultural safety lens. Through partnership with the Vancouver Native Health Society, 36 male HT survivors were recruited using purposive and theoretical sampling. They told their lived experiences and health promoting practices with respect to HAART adherence through interviews and a focus group. Results: Two broad categories (findings) emerged: (1) resilience as facilitator of HAART adherence; and (2) differential views on HT's impact. Resilience was expressed through nine concepts. Conclusion: Most Indigenous men in this study demonstrate health promoting behavior, stay on HAART and have better health and well-being even if the environments they live in are marginalized or heavily stigmatizing. This study shows that areas of strength and adaptation, including factors promoting resilience can be harnessed to foster HAART adherence. With a consideration of these areas of strength and adaptation, this study offers implications for research and recommendations to improve treatment-adherent behavior, fostering healing from HT, and reducing HIV/AIDS-related deaths.

Indigenous Genomic Databases: Pragmatic Considerations and Cultural Contexts.

The potential to grow genomic knowledge and harness the subsequent clinical benefits has escalated the building of background variant databases (BVDs) for genetic diagnosis across the globe. Alongside the upsurge of this precision medicine, potential benefits have been highlighted for both rare genetic conditions and other diagnoses. However, with the ever-present "genomic divide," Indigenous peoples globally have valid concerns as they endure comparatively greater health disparities but stand to benefit the least from these novel scientific discoveries and progress in healthcare. The paucity of Indigenous healthcare providers and researchers in these fields contributes to this genomic divide both in access to, and availability of culturally safe, relevant and respectful healthcare using this genetic knowledge. The vital quest to provide equitable clinical research, and provision and use of genomic services and technologies provides a strong rationale for building BVDs for Indigenous peoples. Such tools would ground their representation and participation in accompanying genomic health research and benefit acquisition. We describe two, independent but highly similar initiatives-the "Silent Genomes" in Canada and the "Aotearoa Variome" in New Zealand-as exemplars that have had to address the aforementioned issues and work to create Indigenous BVDs with these populations. Taking into account the baseline inequities in genomic medicine for Indigenous populations and the ongoing challenges of implementing genomic research with Indigenous communities, we provide a rationale for multiple changes required that will assure communities represented in BVDs, as well as Indigenous researchers, that their participation will maximize benefits and minimize risk.

HIV Point-of-Care Testing in Canadian Settings: A Scoping Review.

BACKGROUND: HIV point-of-care testing (POCT) was approved for use in Canada in 2005 and provides important public health benefits by providing rapid screening results rather than sending a blood sample to a laboratory and waiting on test results. Access to test results soon after testing (or during the same visit) is believed to increase the likelihood that individuals will receive their results and improve access to confirmatory testing and linkages to care. This paper reviews the literature on the utilization of HIV POCT across Canadian provinces. METHODS: We searched OVID Medline, Embase, EBM Reviews, PsycINFO, CINAHL, and 20 electronic grey literature databases. All empirical studies investigating HIV POCT programs in Canada published in French or English were included. RESULTS: Searches of academic databases identified a total of 6,091 records. After removing duplicates and screening for eligibility, 27 records were included. Ten studies are peer-reviewed articles, and 17 are grey literature reports. HIV POCT in Canada is both feasible and accepted by Canadians. It is preferred to conventional HIV testing (ranging from 81.1 to 97%), and users are highly satisfied with the testing process (ranging between 96 and 100%). CONCLUSION: The majority of studies demonstrate that HIV POCT is feasible, preferred, and accepted by diverse populations in Canada. Losses to follow-up and linkage rates are also good. However, more research is needed to understand how best to scale up HIV POCT in contexts that currently have very limited or no access to testing.

Incorporating Group Medical Visits into Primary Healthcare: Are There Benefits?

OBJECTIVE: Group medical visits (GMVs) have been touted as an innovation to effectively and efficiently provide primary healthcare (PHC) services. The purpose of this paper is to report whether GMVs have tangible benefits for providers and patients. METHODS: This descriptive study included in-depth interviews with patients attending and providers facilitating GMVs and direct observation. Five primary care practices in rural towns and four First Nations communities participated. This paper reports on an analysis of interviews and observations. RESULTS: Thirty-four providers and 29 patients were interviewed. Patient participants were an average of 62 years old, mostly female and married. The three most common chronic conditions reported by patients were diabetes (n = 9), high blood pressure (n = 8) and arthritis (n = 7). Three themes illustrated how GMVs: (1) can foster access to needed health services; (2) expand opportunities for collaboration and team-based care; and (3) improve patient and provider experiences. A fourth theme captured structural challenges in delivering GMVs. DISCUSSION: There are tangible benefits in delivering GMVs in PHC. While whole patient panels can benefit from the integration of GMVs into practice, those who could gain the most are patients with complex medical and social needs. GMVs provide an opportunity to enhance PHC, strengthening the system particularly for patients with chronic conditions.

Patient confidentiality within the context of group medical visits: is there cause for concern?

BACKGROUND: Group medical visits (GMVs), clinical encounters with a medical component delivered to groups of patients, have emerged as an innovative approach to potentially increasing efficiency while enhancing the quality of primary health care (PHC). GMVs have created the need to pay explicit attention to patient confidentiality. OBJECTIVE: What strategies are used by providers and patients to address issues of confidentiality within GMVs? DESIGN: In-depth interviews were conducted with 34 PHC providers and 29 patients living in nine rural communities in British Columbia, Canada. Data were analysed using interpretive thematic analysis and a relational autonomy approach. RESULTS: We found three main themes: (i) choosing to disclose: balancing benefits and drawbacks of GMVs, (ii) maintaining confidentiality in GMVs and (iii) gaining strength from interdependent relationships: patients learning from each other. Confidentiality can be addressed and was not a major concern for patients attending or providers facilitating GMVs in these rural communities. DISCUSSION: Patients adopted strategies to address their own and others' concerns related to confidential health information. Providers used multiple strategies to maintain confidentiality within the group, including renegotiating what information is shared and providing examples of what information ought to be kept confidential. CONCLUSIONS: Although GMVs are not for all patients, a relational autonomy approach is useful in drawing attention to the context and structures which may influence their patients' ability to act autonomously. Successful delivery of GMVs requires both patients and providers to negotiate between maintaining confidentiality and an appropriate level of disclosure.

Group medical visits can deliver on patient-centred care objectives: results from a qualitative study.

BACKGROUND: Patient-centred care emerged in the late 1960s as a framework to guide providers and decision-makers towards the provision of more effective health care and better outcomes. An important body of literature has since emerged, reporting mixed results in terms of outcomes. To date, assessments of the effectiveness of patient-centred approaches have focused one-on-one consultations. The purpose of this article is to explore dimensions identified as key in the patient-centred literature in the context of primary health care services delivered in a group setting. Group Medical Visits (GMVs) offer a novel format for the delivery of patient-centred primary health care services, especially for patients living with complex morbidities. METHODS: Drawing on a large study of GMVs, we report on key format and process-oriented elements identified in GMVs, and on their link to improved outcomes. For the purpose of this study, we interviewed 34 providers and 29 patients who have been engaged in GMVs, delivered in rural, northern and First Nation communities in British Columbia, Canada. RESULTS: Our analysis shows that the delivery of PHC in a group format results in a shift in the role of the provider, from that of an adjudicator involved in imparting norms of self-care, to that of a facilitator who assists the group in defining norms of self-care that are based on medical knowledge but also on the broader context of patients' lived experience and on their pragmatic experience. In a group process, peer-patients take on the role of promoting these norms to other patients. This results in a significant shift in the role of the provider, increased trust, increased knowledge for the providers and the patients and better patient self-management. Our results also show increase satisfaction for patients and providers. CONCLUSIONS: GMVs offer an alternative format for the provision of PHC that brings together the benefit of a group process and of a clinical encounter. This format can successfully deliver on the promises of patient-centred care.