Community-based Research Principles Research Articles

Operationalizing the Women-Centred HIV Care Model for trans women and persons with transfeminine experience living with and affected by HIV: a qualitative study

Background The Women-Centered HIV Care (WCHC) Model and associated toolkits were created to address the health care barriers and disparities that women and gender diverse people living with HIV experience. Since trans women and transfeminine people experience disproportionately high rates of HIV acquisition (in comparison to their cisgender peers) amidst biologic, social, political, and historical factors that affect their general care experiences negatively, more research is needed. Aim We aimed to obtain feedback on the WCHC Model regarding the acceptability, applicability, usability, gaps, and potential adaptations needed to meet the needs of trans women and gender diverse people with transfeminine experience. Methods Our study was grounded in community-based research principles and intersectionality frameworks. We conducted semi-structured interviews with 17 trans women and transfeminine people residing in Ontario, Canada. We analyzed the data using a descriptive qualitative content analysis approach. Results Participants were largely satisfied with the WCHC Model. However, participants were concerned with the model’s implementation due to a lack of knowledge among healthcare providers regarding trans women’s experiences within broader social contexts. Simultaneously, participants affirmed the need for care providers to offer person-centered care – a central component of the WCHC Model. Lastly, participants spoke to the healthcare system limitations and failures that disproportionately affected trans women and posed significant barriers to WCHC access and engagement. Discussion Our findings demonstrate that trans women perceive successful healthcare delivery as combining holistic care frameworks – like the WCHC Model – with healthcare providers’ understanding of individual and community needs. There is a need for policy reform to improve the healthcare system. We offer reflections and recommendations for improving healthcare for trans women.

Co-designing an Outreach Intervention for Women Experiencing Street-Involvement and Gender-Based Violence: Community-Academic Partnerships in Action.

Outreach is an important approach to improve health and social care for women experiencing street involvement (SI) or gender-based violence (GBV). Few studies have examined outreach approaches that incorporate SI and GBV. Drawing on feminist theories and principles of community-based research, we detail an inclusive co-design approach for an outreach intervention considering these interrelated contexts. Women with lived experience, researchers, and service leaders drew on research and experiential knowledge to define outreach engagement principles: tackling GBV, personhood and relational engagement, trauma-informed engagement, and harm reduction engagement. The resulting intervention integrates these principles to enable building and sustaining relationships to facilitate care.

Disability Research Principles

This paper presents lessons learned from a project titled Advocates Assembly: Disability Research from the Ground Up. Hosted by Ontario Tech University’s Institute for Disability and Rehabilitation Research (IDRR), the series featured representatives from disability-led activist and rights advocacy groups and disability-focused healthcare and social services providers. Across the series, speakers collectively articulated a number of key principles that ground disability research in community. In this paper the authors organize and analyze themes from these events, to show how community-based research principles have the power to confront and transform institutionally entrenched forms of disability research. Those principles are as follows: researchers should seek out contextually specific knowledge, researchers should unsettle their role as experts, researchers should acknowledge and enact their accountability, and researchers should commit to sustainable and transformational change, which challenges the temporal parameters to projects.

Engaging the Asian American Community to Address Cancer Burden: Experiences and Lessons Learned

Abstract: Background: Reducing cancer health disparities in Asian Americans requires orchestrated efforts and partnerships. Objectives: To describe the approach used by the University of Texas MD Anderson Cancer Center, HOPE Clinic, and Asian American organizations to understand and engage Houston's Asian American communities in cancer research, as well as to share lessons learned. Methods: The community-academic-medical partnership used community-based research principles to build the partnership, form the community advisory board, conduct a community needs assessment, and offer cancer prevention engagement and education. Results: Some lessons learned included balancing language needs with limited resources, incorporating more time and resources to conduct health research in an ethnically diverse community, and promoting awareness of research and its role in cancer prevention in Asian American communities. Conclusions: Community–academic–medical partnerships are promising ways to engage the community, draw on combined expertise, and create research and programs that are scientifically strong and meaningful to the community.

"Before it is too late": Life, death, street performance and homelessness in Aotearoa New Zealand

This article examines the creation of ‘Before It Is Too Late’, a collaborative performance project created with the Peeps- short for Peoples- living on the streets of Aotearoa, New Zealand, who identify as Māori (Indigenous New Zealanders). The Peeps face profound, persistent, unjust inequalities, inequitable mortality rates, and devaluation of their lives by the wider community. The performance project is centred on the Peeps’ perspectives and is informed by whanonga pono (Māori values) and tikanga (customs), the principles of community-based research, relational ethics, and critical performance ethnography. The project aims to initiate a conversation with health professionals to improve the quality of care provided and to ensure greater respect and dignity in relation to the death of Māori homeless people. We present the drama Before It Is Too Late that has resulted from this collaboration with the Peeps to open a transformative space for their voices, experiences, priorities, and rights to be heard and acknowledged.

“I'll struggle, and I'll fall…I'll have my days, but it's okay”

Sixties scoop survivors possess different levels of cultural knowledge. Our objectives were for Indigenous women 1) to increase their cultural knowledge through teachings and engagement with Knowledge Carriers, 2) to have other supports and resources they require identified, and 3) to participate in a Full Moon Ceremony. Community-based research principles were used to establish the study design and research process. Teaching circles and Full Moon Ceremonies were held and experiences in the study collected through focus group discussions. Five themes were identified which included the manifestations of the sixties scoop, longing for culture, (re)connecting to culture, the impacts of culture, and barriers to practicing culture. Important recommendations emerged regarding the practice of culture in ceremony and in programs.

Applicability of a national strategy for patient-oriented research to people who use(d) substances: a Canadian experience

BackgroundEurope and North America are in the grips of a devastating overdose crisis. People who use substances often feel unsafe to access healthcare due to fears of stigma, blame, judgement, poor treatment, or other repercussions. As a result, they often avoid, delay, or leave care, resulting in premature death and missed opportunities for care. Internationally, there have been concerted efforts to move towards patient-engaged research to enhance the quality of health care systems and services. In Canada, the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) initiative promotes engagement of patients as active partners in health care research. As part of a community based patient oriented research project, we critically analyze the SPOR framework to provide insights into what constitutes safer research with people who use(d) substances.MethodsWe undertook a two-stage process that began with a review of community based research principles and the SPOR framework. At the second stage, we undertook a qualitative descriptive study employing focus groups to generate description of the adequacy and appropriateness of the SPOR framework for guiding research with people who use(d) substances on four key dimensions (patient engagement, guiding principles, core areas of engagement and benefits). The data were analyzed using qualitative content analysis to identify key issues and insights.ResultsWhile the SPOR framework includes a range of patient roles, principles and areas for engagement, there are issues and gaps related to essential elements of safe patient-oriented research for people who use substances. These include an individualized focus on patients as partners, lack of recognition of community benefits, power imbalances and distrust due to systemic stigma, engagement as one way capacity building and learning, and lack of accountability for taking action on research findings.ConclusionsGiven the extent of stigma in health care and the ongoing illicit drug policy crisis, strategies for enhancing equitable Patient-Oriented Research (POR) include shifting language from patient partners to community researchers, recognizing power inequities and adding trust and equity as core POR principles including pay equity. Employing community based participatory research as a POR methodology allows the lead researchers to fully engage community throughout the research process, enhances community benefits and accountability for action.

Developing a Virtual Equity Hub: Adapting the Tumor Board Model for Equity in Cancer Care.

We define cancer equity as all people having as the same opportunity for cancer prevention, treatment, and survivorship care. However, marginalized populations continue to experience avoidable and unjust disparities in cancer care, access to clinical trials, and cancer survival. Racial and ethnic minorities, and individuals with low socioeconomic status, Medicaid insurance, limited health literacy, disabilities, and mental health disorders are more likely to experience delays to cancer diagnosis and less likely to receive guideline-concordant cancer care. These disparities are impacted by the social determinants of health including structural discrimination, racism, poverty, and inequities in access to healthcare and clinical trials. There is an urgent need to develop and adapt evidence-based interventions in collaboration with community partners that have potential to address the social determinants of health and build capacity for cancer care for underserved populations. We established the Virtual Equity Hub by developing a collaborative network connecting a comprehensive cancer center, academic safety net hospital, and community health centers and affiliates. The Virtual Equity Hub utilizes a virtual tumor board, an evidence-based approach that increases access to multi-specialty cancer care and oncology subspecialty expertise. We adapted the tumor board model by engaging person-centered teams of multi-disciplinary specialists across health systems, addressing the social determinants of health, and applying community-based research principles with a focus on populations with poor cancer survival. The virtual tumor board included monthly videoconferences, case discussion, sharing of expertise, and a focus on addressing barriers to care and trial participation. Specifically, we piloted virtual tumor boards for breast oncology, neuro-oncology, and individuals with cancer and serious mental illness. The Virtual Equity Hub demonstrated promise at building capacity for clinicians to care for patients with complex needs and addressing barriers to care. Research is needed to measure the impact, reach, and sustainability of virtual equity models for patients with cancer.

Adopting community-based research principles to enhance student learning.

Adopting community-based research principles to enhance student learning.

Indigenous Women from the Sixties Scoop Healing Through the Full Moon Ceremony and Storytelling at Winona's Place.

The Sixties Scoop refers to the policies and practices in Canada from the 1950s to 1980s of forcibly removing Indigenous children from their birth families and communities. Cultural disconnection, loss of identity, and lower social connectedness were outcomes for Sixties Scoop survivors. My project focused on establishing a healing environment at the YWCA Toronto Winona’s Place for Indigenous women who were Sixties Scoop survivors and interested in learning more about the Sixties Scoop. Community-Based Research principles were followed and included working with Indigenous community members. Our project consisted of 8 weekly two-hour healing circles culminating in a Full Moon Ceremony. Through feedback forms and two-hour focus groups, data was collected on the project’s strengths, areas for improvement, and information on resources needed by the women to create a healing environment. Thematic analysis was used to analyze the data. The healing circles and Full Moon Ceremony allowed the women to engage with a Knowledge Carrier and Winona community members, learn about Indigenous teachings and cultures, and work through painful experiences with community members. Although many of the women experienced hardships and trauma, they remained interested in healing and reconnecting to Indigenous cultures. The women shared what they had learned through teachings, how the sessions positively impacted their well-being, how they would apply cultural knowledge into their healing journeys, and offered recommendations on how Winona’s Place could better support them. We demonstrated the significance of Indigenous healing approaches for improving health and well-being among our participants, who have experienced trauma. Cultural connection to Indigeineity is rarely considered, or offered, in mainstream health services. Indigenous healing models and perspectives are important in creating and implementing Indigenous-specific health services and promotion programs. My project hopes to emphasize the importance of decolonizing public health systems and addressing the Calls to Action related to health.

A MIXED-METHODS EVALUATION OF A 20-YEAR SENIOR MENTOR PROGRAM FOR MEDICAL STUDENTS

The purpose of this mixed-methods evaluation is to demonstrate the success from the past 20 class years of continuous use of senior mentors to teach geriatrics to approximately 3400 Year 1 and Year 2 medical students in a home visit model. Using a pre-test post-test design (N=131), we evaluated student satisfaction, self-confidence in various geriatrics assessments, and performance on an Objective Structured Clinical Evaluation (OSCE). We additionally conducted a formal qualitative evaluation of students’ open-ended reflections (N=97) across three years, from 2016-18, on what they learned. In addition, relying on the principles of community-based research, we collaborated with a volunteer senior on all aspects of this evaluation, and included a community of seniors at a large urban senior care high-rise to enhance our interpretive validity by asking seniors to reflect on a set of representative quotes for each qualitative theme. The senior mentor home visit model demonstrated high satisfaction, improved self-confidence in geriatric assessment, attainment of competencies, and improvement in attitude scores. With regard to the qualitative portion of the evaluation, six themes about learning were recognized: (1) how to perform an interview and exam in a home setting, (2) how life for seniors is different than students expected, (3) the value of physical infrastructure and amenities in senior housing, (4) the importance of senior’s community, including family, neighbors, spiritual community, (5) challenges with aging, and (6) strengths among seniors in coping with such challenges while maintaining individual agency.

Hiring, training, and supporting Peer Research Associates: Operationalizing community-based research principles within epidemiological studies by, with, and for women living with HIV

BackgroundA community-based research (CBR) approach is critical to redressing the exclusion of women—particularly, traditionally marginalized women including those who use substances—from HIV research participation and benefit. However, few studies have articulated their process of involving and engaging peers, particularly within large-scale cohort studies of women living with HIV where gender, cultural and linguistic diversity, HIV stigma, substance use experience, and power inequities must be navigated.MethodsThrough our work on the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS), Canada’s largest community-collaborative longitudinal cohort of women living with HIV (n = 1422), we developed a comprehensive, regionally tailored approach for hiring, training, and supporting women living with HIV as Peer Research Associates (PRAs). To reflect the diversity of women with HIV in Canada, we initially hired 37 PRAs from British Columbia, Ontario, and Quebec, prioritizing women historically under-represented in research, including women who use or have used illicit drugs, and women living with HIV of other social identities including Indigenous, racialized, LGBTQ2S, and sex work communities, noting important points of intersection between these groups.ResultsBuilding on PRAs’ lived experience, research capacity was supported through a comprehensive, multi-phase, and evidence-based experiential training curriculum, with mentorship and support opportunities provided at various stages of the study. Challenges included the following: being responsive to PRAs’ diversity; ensuring PRAs’ health, well-being, safety, and confidentiality; supporting PRAs to navigate shifting roles in their community; and ensuring sufficient time and resources for the translation of materials between English and French. Opportunities included the following: mutual capacity building of PRAs and researchers; community-informed approaches to study the processes and challenges; enhanced recruitment of harder-to-reach populations; and stronger community partnerships facilitating advocacy and action on findings.ConclusionsCommunity-collaborative studies are key to increasing the relevance and impact potential of research. For women living with HIV to participate in and benefit from HIV research, studies must foster inclusive, flexible, safe, and reciprocal approaches to PRA engagement, employment, and training tailored to regional contexts and women’s lives. Recommendations for best practice are offered.

ACCESS Open Minds at the University of Alberta: Transforming student mental health services in a large Canadian post‐secondary educational institution

AimDemands for mental health services in post‐secondary institutions are increasing. This paper describes key features of a response to these needs: ACCESS Open Minds University of Alberta (ACCESS OM UA) is focused on improving mental health services for first‐year students, as youth transition to university and adulthood.MethodsThe core transformation activities at ACCESS OM UA are described, including early case identification, rapid access, appropriate and timely connections to follow‐up care and engagement of students and families/carers. In addition, we depict local experiences of transforming existing services around these objectives.ResultsThe ACCESS OM UA Network has brought together staff with diverse backgrounds in order to address the unique needs of students. Together with the addition of ACCESS Clinicians these elements represent a systematic effort to support not just mental health, but the student as a whole. Key learnings include the importance of community mapping to developing networks and partnerships, and engaging stakeholders from design through to implementation for transformation to be sustainable.ConclusionsService transformation grounded in principles of community‐based research allows for incorporation of local knowledge, expertise and opportunities. This approach requires ample time to consult, develop rapport between staff and stakeholders across diverse units and develop processes in keeping with local opportunities and constraints. Ongoing efforts will continue to monitor changing student needs and to evaluate and adapt the transformations outlined in this paper to reflect those needs.

The role of relationships in collaborative partnership success: Lessons from the Alaska Fourth R project

Collaborative partnerships are critical to achieving health equity. As such, it is important to understand what contributes to the success of such partnerships. This paper describes the Alaska Fourth R collaborative, a multisectoral group of agencies (including education, health and human services, the violence against women sector, the governor’s council on domestic violence, and an external evaluator) that successfully planned, implemented and evaluated a multi-focus health education program statewide. The purpose of this paper was to explore the ways in which seven pre-identified factors contributed to the successful achievement of the collaborative’s goals. This project was grounded in community-based research principles, and collectively, the group chose to use Roussos and Fawcett’s (2000) seven-factor model as the basis for the project. Using this model as a guide, semi-structured interviews were conducted with five leaders from the key organizations in the collaborative. In interviews, stakeholders described how each of the seven factors functioned in the Alaska collaborative to contribute to project success, with a particular focus on the critical role of relationships. Three specific relationship facets emerged as cross-cutting themes: flexibility, transparency, and prioritization. In sum, taking the time to build deep and authentic relationships, and then developing a shared vision and mission within the context of relationships that are flexible, transparent and prioritized, provided a strong foundation for future success in this collaborative.

Examining relationships between perceptions and objective assessments of neighborhood environment and sedentary time: Data from the Washington, D.C. Cardiovascular Health and Needs Assessment.

Sedentary time (ST) and neighborhood environment (NE) are predictors of cardiovascular (CV) health. However, little is known about ST's relationship with NE. We examined associations of perceived and objective NE with ST in the predominantly African American faith-based population of the Washington, D.C. CV Health and Needs Assessment. After using community-based research principles, participants reported NE perceptions, including sidewalks, recreational areas, and crime presence. Factor analysis was conducted to explore pertinent constructs; factor sums were created and combined as Total Perception Score (TPS) (higher score = more favorable perception). Objective NE was assessed using Google Maps and the Active Neighborhood Checklist (ANC). ST was self-reported. Linear regression determined relationships between TPS and ST, and ANC scores and ST, for 1) overall population, 2) lower median-income D.C. areas, and 3) higher median-income DC and Maryland areas. For the sample (N = 98.9% African-American, 78% female), lower median-income areas had significantly lower mean TPS and ANC scores than higher median-income areas (p < 0.001). Three factors (neighborhood violence, physical/social environment, and social cohesion) were associated with overall NE perception. Among those in lower median-income areas, there was a negative association between TPS and ST that remained after covariate adjustment; this was not observed in higher median-income areas. There was no association between ANC scores and ST. Poorer NE perception is associated with greater ST for those in lower income areas, while objective environment is not related to ST. Multi-level interventions are needed to improve NE perceptions in lower-median income areas, reduce ST, and improve CV health.

Cohort profile: The Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS).

Globally, women are at increased vulnerability to HIV due to biological, social, structural, and political reasons. Women living with HIV also experience unique issues related to their medical and social healthcare, which makes a clinical care model specific to their needs worthy of exploration. Furthermore, there is a dearth of research specific to women living with HIV. Research for this population has often been narrowly focused on pregnancy-related issues without considering their complex structural inequalities, social roles, and healthcare and biological needs. For these reasons, we have come together, as researchers, clinicians and community members in Canada, to develop the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS) to investigate the concept of women-centred HIV care (WCHC) and its impact on the overall, HIV, women’s, mental, sexual, and reproductive health outcomes of women living with HIV. Here, we present the CHIWOS cohort profile, which describes the cohort and presents preliminary findings related to perceived WCHC. CHIWOS is a prospective, observational cohort study of women living with HIV in British Columbia (BC), Ontario, and Quebec. Two additional Canadian provinces, Saskatchewan and Manitoba, will join the cohort in 2018. Using community-based research principles, CHIWOS engages women living with HIV throughout the entire research process meeting the requirements of the ‘Greater Involvement of People living with HIV/AIDS’. Study data are collected through an interviewer-administered questionnaire that uses a web-based platform. From August 2013 to May 2015, a total of 1422 women living with HIV in BC, Ontario, and Quebec were enrolled and completed the baseline visit. Follow-up interviews are being conducted at 18-month intervals. Of the 1422 participants at baseline, 356 were from BC (25%), 713 from Ontario (50%), 353 from Quebec (25%). The median age of the participants at baseline was 43 years (range, 16–74). 22% identified as Indigenous, 30% as African, Caribbean or Black, 41% as Caucasian/White, and 7% as other ethnicities. Overall, 83% of women were taking antiretroviral therapy at the time of the baseline interview and of them, 87% reported an undetectable viral load. Of the 1326 women who received HIV medical care in the previous year and responded to corresponding questions, 57% (95% CI: 54%-60%) perceived that the care they received from their primary HIV doctor had been women-centred. There were provincial and age differences among women who indicated that they received WCHC versus not; women from BC or Ontario were more likely to report WCHC compared to participants in Quebec. They were also more likely to be younger. CHIWOS will be an important tool to develop care models specific for women living with HIV. Moreover, CHIWOS is collecting extensive information on socio-demographics, social determinants of health, psychological factors, and sexual and reproductive health and offers an important platform to answer many relevant research questions for and with women living with HIV. Information on the cohort can be found on the study website (http://www.chiwos.ca).

Health Literacy and Informed Consent Materials: Designed for Documentation, Not Comprehension of Health Research

Minority populations with health disparities are underrepresented in research designed to address those disparities. One way to improve minority representation is to use community-based participatory methods to overcome barriers to research participation, beginning with the informed consent process. Relevant barriers to participation include lack of individual or community awareness or acceptance of research processes and purposes. These barriers are associated with limited health literacy. To inform recommendations for an improved consent process, we examined 97 consent documents and 10 associated Institutional Review Board websites to determine their health literacy demands and degree of adherence to principles of community-based research. We assessed the reading level of consent documents and obtained global measures of their health literacy demand by using the Suitability and Comprehensibility Assessment of Materials instrument. Although these documents were deemed suitable as medical forms, their readability levels were inappropriate, and they were unsuitable for educating potential participants about research purposes. We also assessed consent forms and Institutional Review Board policies for endorsement of community-based participatory principles, finding that very few acknowledged or adhered to such principles. To improve comprehension of consent documents, we recommend restructuring them as educational materials that adhere to current health literacy guidelines.

Implementing a Community-Based, Service Coordination and Delivery Intervention With Urban, Minority Parents

Purpose: The purpose of this pilot study was to evaluate the influence of a community-based, service-coordination and delivery intervention (CONNECT Program) on urban, minority parents’ human capital, financial capital, community social capital, and service utilization. Method: This study used a pre–posttest single group design and mixed methods as well as incorporated principles of community-based research. Peer outreach workers engaged 80 urban, minority parents living in Manhattan (New York City) in the CONNECT Program, which offered them referrals to formal agency services and informal community supports as well as psychoeducational workshops on varied topics. Results: Findings from paired-samples t-tests indicate that at follow-up, 49 participants displayed significant improvements after 12 months in their education, neighborhood trust, service use, and problem resolution. Discussion: Findings suggest that CONNECT was feasible within the agency and community. Moreover, CONNECT was associated with higher human and community social capital as well as service utilization outcomes.

Establishing the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS): Operationalizing Community-based Research in a Large National Quantitative Study.

BackgroundCommunity-based research has gained increasing recognition in health research over the last two decades. Such participatory research approaches are lauded for their ability to anchor research in lived experiences, ensuring cultural appropriateness, accessing local knowledge, reaching marginalized communities, building capacity, and facilitating research-to-action. While having these positive attributes, the community-based health research literature is predominantly composed of small projects, using qualitative methods, and set within geographically limited communities. Its use in larger health studies, including clinical trials and cohorts, is limited. We present the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS), a large-scale, multi-site, national, longitudinal quantitative study that has operationalized community-based research in all steps of the research process. Successes, challenges and further considerations are offered.DiscussionThrough the integration of community-based research principles, we have been successful in: facilitating a two-year long formative phase for this study; developing a novel survey instrument with national involvement; training 39 Peer Research Associates (PRAs); offering ongoing comprehensive support to PRAs; and engaging in an ongoing iterative community-based research process. Our community-based research approach within CHIWOS demanded that we be cognizant of challenges managing a large national team, inherent power imbalances and challenges with communication, compensation and volunteering considerations, and extensive delays in institutional processes. It is important to consider the iterative nature of community-based research and to work through tensions that emerge given the diverse perspectives of numerous team members.ConclusionsCommunity-based research, as an approach to large-scale quantitative health research projects, is an increasingly viable methodological option. Community-based research has several advantages that go hand-in-hand with its obstacles. We offer guidance on implementing this approach, such that the process can be better planned and result in success.

Health Care Engagement of Limited English Proficient Latino Families: Lessons Learned from Advisory Board Development.

Specific information on the development and evaluation of patient/family engagement in health care improvement for populations with limited English proficiency (LEP) is lacking. We sought to provide information for use by other health care organizations aiming to engage LEP populations through advisory groups. Informed by community-based research principles, we formed a family advisory board of LEP Latino families and conducted a multimodal evaluation of initial implementation and partnership development. The board met process measures goals for sustained engagement of LEP families and for establishing a group structure and process. Board outcomes included contributions to clinic educational materials and initiation of a project to increase the child friendliness of the physical space. Mothers on the board reported satisfaction with their participation. We successfully sustained engagement of LEP Latino families in health care improvement using an advisory board. To promote patient-centered care and address health care disparities, LEP populations should be included in patient engagement programs.