Shifting gears: Creating equity informed leaders for effective learning health systems.

Leadership is vital to a well-functioning and effective health system. This importance was underscored during the COVID-19 pandemic. As disparities in infection and mortality rates became pronounced, greater calls for equity-informed healthcare emerged. These calls led some leaders to use the Learning Health System (LHS) approach to quickly transform research into healthcare practice to mitigate inequities causing these rates. The LHS is a relatively new framework informed by many within and outside health systems, supported by decision-makers and financial arrangements and encouraged by a culture that fosters quick learning and improvements. Although studies indicate the LHS can enhance patients' health outcomes, scarce literature exists on health leaders' use and incorporation of equity into the LHS. This article begins addressing this gap by examining how equity can be incorporated into LHS activities and discussing ways leaders can ensure equity is considered and achieved in rapid learning cycles.

Fairness for Whom? Learning Health Systems' Approach to Equity in Healthcare.

Many healthcare systems use "equity" as a catch-all term to underscore their commitment to delivering care matching users' needs. Despite its ubiquity, it is often haphazardly used and applied to care and improvement efforts. As the learning health systems (LHSs) approach gains prominence, LHS researchers have sought to embed equity into their work while navigating systems with differing views of equity. We examine several components of equity, its definitions within LHSs and knowledge from LHSs' equity approach that could be implemented across systems. We conclude by suggesting various ways in which readers can embed equity into their respective LHSs.

Everybody's talking about equity, but is anyone really listening?: The case for better data-driven learning in health systems.

Data collection, analysis, and data driven action cycles have been viewed as vital components of healthcare for decades. Throughout the COVID-19 pandemic, case incidence and mortality data have consistently been used by various levels of governments and health institutions to inform pandemic strategies and service distribution. However, these responses are often inequitable, underscoring pre-existing healthcare disparities faced by marginalized populations. This has prompted governments to finally face these disparities and find ways to quickly deliver more equitable pandemic support. These rapid data informed supports proved that learning health systems (LHS) could be quickly mobilized and effectively used to develop healthcare actions that delivered healthcare interventions that matched diverse populations' needs in equitable and affordable ways. Within LHS, data are viewed as a starting point researchers can use to inform practice and subsequent research. Despite this innovative approach, the quality and depth of data collection and robust analyses varies throughout healthcare, with data lacking across the quadruple aims. Often, large data gaps pertaining to community socio-demographics, patient perceptions of healthcare quality and the social determinants of health exist. This prevents a robust understanding of the healthcare landscape, leaving marginalized populations uncounted and at the sidelines of improvement efforts. These gaps are often viewed by researchers as indication that more data is needed rather than an opportunity to critically analyze and iteratively learn from multiple sources of pre-existing data. This continued cycle of data collection and analysis leaves one to wonder if healthcare has a data problem or a learning problem. In this commentary, we discuss ways healthcare data are often used and how LHS disrupts this cycle, turning data into learning opportunities that inform healthcare practice and future research in real time. We conclude by proposing several ways to make learning from data just as important as the data itself.

Positioning patients to partner: exploring ways to better integrate patient involvement in the learning health systems.

Globally, health systems are increasingly striving to deliver evidence based care that improves patients', caregivers' and communities' health outcomes. To deliver this care, more systems are engaging these groups to help inform healthcare service design and delivery. Their lived experiences-experiences accessing and/or supporting someone who accesses healthcare services-are now viewed by many systems as expertise and an important part of understanding and improving care quality. Patients', caregivers' and communities' participation in health systems can range from healthcare organizational design to being members of research teams. Unfortunately, this involvement greatly varies and these groups are often sidelined to the start of research projects, with little to no role in later project stages. Additionally, some systems may forgo direct engagement, focusing solely on patient data collection and analysis. Given the benefits of active patient, caregiver and community participation in health systems on patient health outcomes, systems have begun identifying different approaches to studying and applying findings of patient, caregiver and community informed care initiatives in a rapid and consistent fashion. The learning health system (LHS) is one approach that can foster deeper and continuous engagement of these groups in health systems change. This approach embeds research into health systems, continuously learning from data and translating findings into healthcare practices in real time. Here, ongoing patient, caregiver and community involvement is considered vital for a well functioning LHS. Despite their importance, great variability exists as to what their involvement means in practice. This commentary examines the current state of patient, caregiver and community participation in the LHS. In particular, gaps in and need for resources to support their knowledge of the LHS are discussed. We conclude by recommending several factors health systems must consider in order to increase participation in their LHS. Systems must: (1) assess patients', caregivers and community understanding of how their feedback are used in the LHS and how collected data are used to inform patient care; (2) review the level and extent of these groups' participation in health system improvement activities; and (3) examine whether health systems have the workforce, capacity and infrastructure to nurture continuous and impactful engagement.

Patients, caregivers and communities have started taking more hands on roles in health systems, partnering with healthcare providers and researchers to impact the ways healthcare services are made and delivered. Their input has been shown to improve patient health. While many systems are working to include patients, caregivers and communities in helping improve healthcare, this work often focuses on collecting and analyzing patient data without using it in a timely way. Also, the level of their input can vary and is often limited to the start of a research project. As more health systems recognize the importance of their input in creating better healthcare, some are using different approaches to make this feedback a constant part of their systems. The learning health system (LHS) is one approach that can support deeper and ongoing patient, caregiver and community involvement in health system change. In the LHS, projects are frequently reviewed and feedback used to help health systems make changes as they go. While their involvement is critical to a well functioning LHS, it is unclear what this involvement looks like. This commentary reviews the current state of this involvement. We offer readers a way forward and suggestions to help them determine if they are actively including patients, caregivers and communities in their LHS. Suggestions include reviewing: (1) the ways data are collected and used; (2) how patients, caregivers and communities are involved in health system improvement efforts; and (3) whether or not systems have the tools needed to frequently partner with these groups.

Saying and doing are different things: a scoping review on how health equity is conceptualized when considering healthcare system performance.

INTRODUCTION: Ensuring healthcare systems provide equitable, high quality care is critical to their users' overall health and wellbeing. Typically, systems use various performance frameworks and related indicators to monitor and improve healthcare. Although these frameworks usually include equity, the extent that equity is reflected in these measurements remains unclear. In order to create a system that meets patients' needs, addressing this uncertainty is important. This paper presents findings from a scoping review that sought to answer the question 'How is equity conceptualized in healthcare systems when assessing healthcare system performance?'. METHODS: Levac's scoping review approach was used to locate relevant articles and create a protocol. Included, peer-reviewed articles were published between 2015 to 2020, written in English and did not discuss oral health and clinician training. These healthcare areas were excluded as they represent large, specialized bodies of literature beyond the scope of this review. Online databases (e.g., MEDLINE, CINAHL Plus) were used to locate articles. RESULTS: Eight thousand six hundred fifty-five potentially relevant articles were identified. Fifty-four were selected for full review. The review yielded 16 relevant articles. Six articles emanated from North America, six from Europe and one each from Africa, Australia, China and India respectively. Most articles used quantitative methods and examined various aspects of healthcare. Studies centered on: indicators; equity policies; evaluating the equitability of healthcare systems; creating and/or testing equity tools; and using patients' sociodemographic characteristics to examine healthcare system performance. CONCLUSION: Although equity is framed as an important component of most healthcare systems' performance frameworks, the scarcity of relevant articles indicate otherwise. This scarcity may point to challenges systems face when moving from conceptualizing to measuring equity. Additionally, it may indicate the limited attention systems place on effectively incorporating equity into performance frameworks. The disjointed and varied approaches to conceptualizing equity noted in relevant articles make it difficult to conduct comparative analyses of these frameworks. Further, these frameworks' strong focus on users' social determinants of health does not offer a robust view of performance. More work is needed to shift these narrow views of equity towards frameworks that analyze healthcare systems and not their users.

Exploring young Black gay, bisexual and other men who have sex with men's PrEP knowledge in Toronto, Ontario, Canada.

Despite significant advances in the HIV treatment and prevention landscape such as pre-exposure prophylaxis (PrEP), young Black-Canadian gay, bisexual and other sexual minority men continue to experience disproportionately high rates of HIV infection. While research has explored the factors associated with their higher HIV exposure and the efficacy of STI/HIV prevention programmes, there remains a paucity of research on their knowledge of HIV prevention strategies such as PrEP. We interviewed twenty-two young men and used a constructivist grounded theory approach to qualitatively analyse these young men's PrEP knowledge. Intersectionality and the social ecological model allowed us to explore how social locations (e.g. race, sexual orientation), interacted with individual, interpersonal and community contexts to shape their understanding. Our analysis revealed two interrelated barriers to PrEP knowledge and uptake. The first centred on the ineffectiveness of institutions in disseminating PrEP information to participants. The second focused on the impact of participants' social locations and perceptions of PrEP users based on their PrEP knowledge. Findings suggest the need for more targeted, culturally congruent PrEP dissemination strategies and PrEP prescription policies that acknowledge the various social locations and ecologies in which young Black gay, bisexual and other men who have sex with men reside.

Dying to Learn: A Scoping Review of Breast and Cervical Cancer Studies Focusing on Black Canadian Women.

BACKGROUND: In Canada, data on race/ethnicity are not routinely collected. Black Canadian women may be under-screened for cervical/breast cancer and may be predisposed to worse outcomes, however data are difficult to find. OBJECTIVES: A scoping review was conducted to identify common themes and gaps in the literature regarding cervical/breast cancer prevention and management in Black Canadian women. METHODS: Medline, Embase, the Cochrane Library, CINAHL, PsycINFO, and Scopus databases (2003-2018) and grey literature were searched. Relevant studies were selected, data were charted, and themes were extracted. RESULTS: Twenty-three studies met inclusion criteria. Women from sub-Saharan Africa appear to have lower cervical and breast cancer screening rates; those of Caribbean/Latin American origin appear to have screening rates comparable to the general population; no studies reported prevalence or mortality rates for Black Canadian women. CONCLUSION: There is a paucity of health research on breast and cervical cancer specific to Black Canadian women.

"One program that could improve health in this neighbourhood is ____?" using concept mapping to engage communities as part of a health and human services needs assessment.

BACKGROUND: This paper presents the findings of a rapid needs assessment conducted at the request of the local health authority responsible for health care services, the Toronto Central Local Health Integration Network (Ontario, Canada), to inform health and social service planning. METHODS: We utilized concept mapping methodology to facilitate engagement with diverse stakeholders-more than 300 community members and service providers-with a focus on hard to reach populations. Key informant interviews with service providers were used to augment findings. RESULTS: Participants identified 48 unique services or service approaches they believed would improve the health of residents in the area, including those addressing health care, mental health and addictions, youth, families, people experiencing homelessness, seniors, general social services, and services targeting specific populations. While service providers consistently identified a critical need for mental health and addiction services, community members placed greater importance on the social determinants of health including access to housing, job placement supports and training and service accessibility. Both groups agreed that services and programs for seniors and people experiencing homelessness would be highly important. CONCLUSION: Our study provides a unique example of using concept mapping as a tool to aid a rapid service gap analysis and community engagement in a metropolitan area. The findings also reinforce the importance of working cross-sectorally, using a Health in All Policies approach when planning services for underserved populations.

Minding the gap: health and social care provider perceptions of parental communication and Black-Canadian youths' sexual health.

Health and social care providers' perceptions of Black-Canadian parent-youth sexual health communication has important implications for addressing knowledge gaps in the provision of services to young people and their parents. Providers' perceptions are crucial as they often act as advisers in tailoring programmes or services to the perceived needs of parents and youth. To understand these perceptions, 17 semi-structured in-depth interviews were conducted with providers who worked with African, Caribbean or Black (ACB) parents and youth in Toronto, Ontario, Canada. Critical Race Theory was used to help guide the interpretation of findings. The findings revealed providers believed that many parents were unlikely to explicitly discuss sexual health or HIV prevention with young people. Additionally, providers perceived that the content of and approach to parent-youth sexual health communication differed between African and Caribbean clients. Moreover, providers believed that both parents' and young people's sex and gender impacted the quality, content and style of sexual health communication and had important implications for programme development. Overall, findings suggest a need for understanding the development of providers' perceptions of this communication, ways to address these perceptions and further parent-provider collaboration to promote Black youths' sexual health.

Adapting and pilot testing the Healthy Love HIV and sexually transmitted infection prevention intervention with African, Caribbean and Black women in community-based settings in Toronto, Canada.

We adapted the Healthy Love Workshop (HLW), an HIV prevention workshop for African American women in the United States, for African, Caribbean and Black (ACB) women in Toronto, Canada. We conducted a pilot study with ACB women ( n = 80) in ten community-based settings with pre-test (T1), post-test (T2) and three-month follow-up (T3) surveys. Mixed-effect regression results indicated significant increases in condom use self-efficacy and sexually transmitted infection (STI) knowledge scores from T1 to T3. Qualitative feedback revealed increased STI knowledge, confidence using condoms and suggestions for future HLWs. Findings highlight the promise of the adapted HLW for HIV/STI prevention with ACB women in Canada.

Ko-Pamoja: the feasibility of a lay health educator-led breast and cervical screening program for Black women in Ontario, Canada (short report).

BACKGROUND: Effective strategies are needed to actively encourage Black women in Canada to adhere to breast and cervical cancer screening and follow-up. In this study, we describe "Ko-Pamoja," a pilot peer education program for breast and cervical cancer screening targeted specifically at Black women in Toronto, Canada. METHODS: We used an Afrocentric lens to design the program, whose purpose was to increase awareness of cancer susceptibility and the benefits of screening for breast and cervical cancer for Black women. Participants were recruited through three Black-predominant churches. We used pre- and post-session questionnaires to assess changes in participant awareness of cancer susceptibility and screening guidelines, and changes in screening self-efficacy. RESULTS: 30 women attended sessions. Ko-Pamoja was able to increase awareness of cancer susceptibility, awareness of screening guidelines, and screening self-efficacy. Two months after the last session, four women had been screened for breast cancer at a participating mammogram site. CONCLUSIONS: Building on the successes of Ko-Pamoja, future versions are being developed in the region. These versions will be adapted to take into account our lessons learned while maintaining the Afrocentric lens and community-focussed approach, in order to promote cancer screening and ultimately improve outcomes.

Barriers and facilitators to HIV testing among young men who have sex with men and transgender women in Kingston, Jamaica: a qualitative study.

INTRODUCTION: Young men who have sex with men (MSM) in Jamaica have the highest HIV prevalence in the Caribbean. There is little information about HIV among transgender women in Jamaica, who are also overrepresented in the Caribbean epidemic. HIV-related stigma is a barrier to HIV testing among Jamaica's general population, yet little is known of MSM and transgender women's HIV testing experiences in Jamaica. We explored perceived barriers and facilitators to HIV testing among young MSM and transgender women in Kingston, Jamaica. METHODS: We implemented a community-based research project in collaboration with HIV and lesbian, gay, bisexual and transgender (LGBT) agencies in Kingston. We held two focus groups, one with young (aged 18-30 years) transgender women (n = 8) and one with young MSM (n = 10). We conducted 53 in-depth individual semi-structured interviews focused on HIV testing experiences with young MSM (n = 20), transgender women (n = 20), and community-based key informants (n = 13). We conducted thematic analysis to identify, analyze, and report themes. RESULTS: Participant narratives revealed social-ecological barriers and facilitators to HIV testing. Barriers included healthcare provider mistreatment, confidentiality breaches, and HIV-related stigma: these spanned interpersonal, community and structural levels. Healthcare provider discrimination and judgment in HIV testing provision presented barriers to accessing HIV services (e.g. treatment), and resulted in participants hiding their sexual orientation and/or gender identity. Confidentiality concerns included: clinic physical arrangements that segregated HIV testing from other health services, fear that healthcare providers would publicly disclose their status, and concerns at LGBT-friendly clinics that peers would discover they were getting tested. HIV-related stigma contributed to fear of testing HIV-positive; this intersected with the stigma of HIV as a "gay" disease. Participants also anticipated healthcare provider mistreatment if they tested HIV positive. Participants identified individual (belief in benefits of knowing one's HIV status), social (social support) and structural (accessible testing) factors that can increase HIV testing uptake. CONCLUSION: Findings suggest the need for policy and practice changes to enhance confidentiality and reduce discrimination in Jamaica. Interventions to challenge HIV-related and LGBT stigma in community and healthcare settings can enhance access to the HIV prevention cascade among MSM and transgender youth in Jamaica.

"It's for us -newcomers, LGBTQ persons, and HIV-positive persons. You feel free to be": a qualitative study exploring social support group participation among African and Caribbean lesbian, gay, bisexual and transgender newcomers and refugees in Toronto, Canada.

BACKGROUND: Stigma and discrimination harm the wellbeing of lesbian, gay, bisexual and transgender (LGBT) people and contribute to migration from contexts of sexual persecution and criminalization. Yet LGBT newcomers and refugees often face marginalization and struggles meeting the social determinants of health (SDOH) following immigration to countries such as Canada. Social isolation is a key social determinant of health that may play a significant role in shaping health disparities among LGBT newcomers and refugees. Social support may moderate the effect of stressors on mental health, reduce social isolation, and build social networks. Scant research, however, has examined social support groups targeting LGBT newcomers and refugees. The purpose of this qualitative study was to explore experiences of social support group participation among LGBT African and Caribbean newcomers and refugees in an urban Canadian city. METHODS: We conducted 3 focus groups with a venue-based sample of LGBT African and Caribbean newcomers and refugees (n = 29) who attended social support groups at an ethno-specific AIDS Service Organization. Focus groups followed a semi-structured interview guide and were analyzed using narrative thematic techniques. RESULTS: Participant narratives highlighted immigration stressors, social isolation, mental health issues, and challenges meeting the SDOH. Findings reveal multi-level benefits of social support group participation at intrapersonal (self-acceptance, improved mental health), interpersonal (reduced isolation, friendships), community (reciprocity, reduced stigma and discrimination), and structural (housing, employment, immigration, health care) levels. CONCLUSIONS: Findings suggest that social support groups tailored for LGBT African and Caribbean newcomers and refugees can address social isolation, community resilience, and enhance resource access. Health care providers can provide support groups, culturally and LGBT competent health services, and resource access to promote LGBT newcomers and refugees' health and wellbeing.