Authentic Community Engagement Research Articles

Moving from Principle to Practice: A Researcher's Guide to Co-Leading Engaged Research with Community Partners and Patients with Lived Experience to Reduce Maternal Mortality and Morbidity for Maternal Sepsis.

Maternal mortality and morbidity disproportionately affect birthing people from racialized populations. Unfortunately, researchers can often compound these poor outcomes through a lack of authentic community engagement in research beyond the role of the research subject, leading to ineffective strategies for improving care and increasing equity. This article details the real-life strategies utilized to develop a community-engaged research project of a phased federally funded grant employing community engagement principles of co-leadership and co-creation. It also includes reflections from the researchers and advisory board on promising practices and lessons learned for equitably engaging patients and community partners in research. This article details the application of principles of community-engaged research in a federally funded phased research project focused on understanding disparities in maternal sepsis to develop better clinical and community interventions. Specifically, it discusses early steps in the research partnership to create a sustainable partnership with a Community Leadership Board guided by the principles of transparency, respect, compensation, and increasing research justice. Based on the authors' experience, recommendations are provided for funders, researchers, and institutions to improve the quality and outcomes of communityengaged research. This work adds to community-based participatory and community-engaged research literature by providing concrete and practical steps for equitably engaging in research partnerships with a variety of collaborators. In conclusion, integrated patient and community co-leadership enhances research by providing insight, access to communities for education and dissemination of information, and identifying critical areas needing change. This report may help others address fundamental principles in this journey.

Proposing the Community Triad Model to action social accountability in medical schools

This article is the third in a series exploring drivers of social accountability (SA) in medical schools across Canada. Findings from the two previous articles have highlighted a central relationship between community, students, and faculty at medical schools, and led to the emergence of a new social accountability model– the Community Triad Model (CTM). The CTM proposes an interconnectedness between community, students, faculty, and the broader institution, and the pathways through which community-based learning directly and indirectly influences decision-making in medical institutions. This article explores the relationships between the three arms of the CTM by examining the literature on community engagement and SA, as well as by revisiting popular models and foundational SA reports to garner insights into authentic community engagement in health professions education. While there is an abundance of literature demonstrating the impact of community placements on students, there are limited studies describing the influence of communities on faculty and the broader institution either directly, or indirectly via students. The authors recommend that institutions be more intentional in engaging students and faculty, and learn from their experiences with community to shape curriculum, practices, policies, and culture of the broader institution. This study offers an operational model of SA that is easy to adopt and implement. It intends to demonstrate how the components of the triad (students, faculty/leadership, community) function together in the community engagement and social accountability of medical schools.

Walking together in friendship: Learning about cultural safety in mainstream mental health services through Aboriginal Participatory Action Research.

Culturally safe service provision is essential to improving social and emotional wellbeing among Aboriginal and Torres Strait Islander communities, and to eliminating health inequities. Cultural safety is about ensuring that all people have a safe and healing journey through services, regardless of their cultural background. In this project, we aim to (1) understand how Aboriginal and Torres Strait Islander peoples conceptualise cultural safety, and (2) co-design a qualitative interview for the next phase of this project, where we plan to learn about experiences of cultural safety within mental health services. We conducted six focus groups (in one metro and two regional areas, Western Australia). Following an Aboriginal Participatory Action Research methodology, we yarned with Aboriginal and Torres Strait Islander mental health service users, carers, community members, mental health professionals and Cultural Healers about cultural safety. Participants described a culturally safe service as one where Aboriginal cultural knowledges, life experiences, issues and protocols are understood and acknowledged, and reported that mainstream mental health services are not currently culturally safe. Participants emphasised the importance of building trust, rapport, reciprocity and following appropriate relational processes when designing a qualitative interview for the next phase. A lack of cultural safety in mental health services is likely to contribute to the disparity in outcomes between Aboriginal and Torres Strait Islander peoples and non-Indigenous Australians. Embedding cultural safety into research design allows for authentic community engagement and facilitates knowledge sharing around ways to improve cultural safety in mental health services.

Design and Implementation of the Diabetes Impact Project: A Multisector Partnership to Reduce Diabetes Burden in Indianapolis Communities.

Community-level health disparities have not arisen suddenly but are the result of long-term systemic inequities. This article describes the design and implementation of a community-engaged multisector partnership to address health disparities by reducing the diabetes burden in 3 Indianapolis communities through the implementation of evidence-based strategies across the prevention continuum. The project has 5 foundational design principles: engage partners from multiple sectors to address community health, focus on geographic communities most affected by the health disparity, practice authentic community engagement, commit for the long term, and utilize a holistic approach spanning the prevention continuum. The design principles are incorporated into the following project components in each community: (1) health system community health workers (hCHWs), (2) neighborhood CHWs (nCHWs), (3) community health promotion initiatives, and (4) resident steering committees, as well as a backbone organization responsible for overall coordination, project communication, evaluation, and partnership coordination. This complex multilevel intervention is being evaluated using data sources and methodologies suited to each project component and its purpose overall. Each component is being evaluated independently and included holistically to measure the impact of the project on the health and culture of health in the communities. Key Performance Indicators were established upon project initiation as our common metrics for the partnership. Because complex interventions aiming at population-level change take time, we evaluate Diabetes Impact Project-Indianapolis Neighborhoods (DIP-IN), assuming its impact will take many years to achieve. Health disparities such as the diabetes prevalence in project communities have not arisen suddenly but are the result of long-term systemic inequities. This complex issue requires a complex holistic solution with long-term commitment, trusted partnerships, and investment from diverse sectors as seen in this project. Implications for policy and practice include the need to identify stable funding mechanisms to support these types of holistic approaches.

Importance of Community Engagement in Data Decision Making.

Importance of Community Engagement in Data Decision Making.

Using Collective Impact to Advance Birth Equity: A Comparison of Two Cross-Sector Efforts in California.

Preterm birth, defined as birth at gestational age before 37 weeks, is a major public health concern with marked racial disparities driven by underlying structural and social determinants of health. To achieve population-level reductions in preterm birth and to reduce racial inequities, the University of California, San Francisco's California Preterm Birth Initiative catalyzed two cross-sector coalitions in San Francisco and Fresno using the Collective Impact (CI) approach. The purpose of this study is to compare two preterm birth-focused CI efforts and identify common themes and lessons learned. Researchers conducted in-depth interviews (n = 19) and three focus groups (n = 20) with stakeholders to assess factors related to collaboration. Transcripts were coded and analyzed using modified grounded theory. Findings were compared by year of data collection (first and second cycle in each location) and geographic location (Fresno and San Francisco) and discussed with CI participants for input. Although both communities adopted the core tenets of CI to address preterm birth and racial inequities, each employed distinct organizational structures, strategic frameworks, and interventions. Common themes emerged around the importance of authentic community engagement, transparency in the process of prioritization and decision-making, addressing racism as a root cause of disparities in birth outcomes, and candid communication among partners. Future CI efforts, particularly those catalyzed by academic institutions, should ensure community members are active partners in program development and decision-making. CI efforts focused on combatting racial health inequities should center racism as a root cause and build capacity among coalition partners.

Just Research: Advancing Antiracist and Antioppressive Social Work Research.

The Society for Social Work and Research (SSWR) created its Research Capacity and Development Committee in 2017 to build research capacity across the careers of social work scholars. The committee has initiated multiple conferences and webinar sessions that have increasingly focused on antiracist and antioppressive (ARAO) research, including "Mentorship for Antiracist and Inclusive Research" and "Strategies for Supporting Antiracist Pedagogy & Scholarship: Reimagining Institutional Systems & Structures." This commentary integrates themes from these sessions and other discussions among committee members about strategies to advance ARAO research. Although SSWR board members reviewed and approved this submission, it is not an official statement of SSWR or its board of directors.

Nonprofit Board Membership: A Novel Mechanism for Authentic Community Engagement and Leadership Development for Resident Physicians.

Many residency programs have increased curriculum emphasis on the social determinants of health in recent years, and genuine longitudinal experiences for community engagement can be rare and challenging to design. The pediatric residency program at the University of Pittsburgh Medical Center Children's Hospital of Pittsburgh has its separate Pediatric Advocacy-Leadership-Service (PALS) program track with 6 total residents across all trainee levels in a given academic year. Since 2011, the PALS program's mission is to train residents to be outstanding primary care pediatricians with the knowledge and skills to provide effective health care, leadership, and advocacy on behalf of children and families in medically underserved communities. This specific training is accomplished through multiple elements in the spirit of the acronym. Authentic leadership training, beyond personality profiles and suggested readings, is exceptionally difficult to provide. The PALS program provides the following unique training opportunity to meet this need.Enabling authentic community engagement while simultaneously offering robust leadership development, the PALS program facilitates each resident to be a member on the board of directors of a local nonprofit organization during residency training. This pairing is done with individual attention to each resident's interests and the community organization's vision and values. First-year PALS residents are asked to critically reflect on personal strengths, goals, and areas of growth. Local community pediatrician and public health leader, Dr Amy Nevin, has years of experience with grassroots community health networks to coordinate “the match” between each nonprofit organization and resident. To enable junior residents to contribute meaningfully as board members, she and the PALS third-year residents provide specific mentorship and are in communication with various local nonprofits gauging specific organization needs. First, an interview is completed, and the nonprofit leadership decides whether the resident physician is their desired board member candidate. If all parties are interested in proceeding, clear expectations are outlined upfront. For example, residents are never expected to make large personal financial donations to the organization. Residents are transparent regarding their rigorous clinical schedules. Nonprofit organizations provide board meeting times to the residents and share reasonable attendance expectations. Residents then provide board meeting times in advance to residency program leadership for accommodations when possible. The timeline varies per each pairing but is finalized by the end of intern year at the latest to provide at least 2 full years of active nonprofit board membership.The resident nonprofit board membership experience has been an empowering community opportunity with mutual benefits for both local nonprofits and residents. Several residents have cited their nonprofit board role as one of their most rewarding experiences of residency. Many residents invited their community partners to visit the hospital for guest lectures during teaching conferences. Community nonprofits have utilized resident perspectives, often the only medical voice on many boards, on numerous occasions including navigating the COVID-19 pandemic. The list of participating nonprofit organizations (Table) has grown even as some partners actively seek a new resident board member as graduating ones complete their residency programs. Most residents had never previously held board responsibilities, and this leadership opportunity intends to serve all graduates as future community health leaders in their careers. Further investigation is needed longitudinally to survey graduates and community partners of this experience to understand its long-term career impact.

“Community engagement via restorative justice to build equity-oriented crisis standards of care”

The COVID-19 (SARS-CoV-2) Pandemic has revealed multiple structural inequities within the United States (US), with high social vulnerability index communities shouldering the brunt of death and disability of this pandemic. BIPOC/Latinx people have undergone hospitalizations and death at magnitudes greater than White people in the US. The untold second casualties are health care workers that are suffering from increased risk of infection, death, and mental health crisis. Many health care workers are abandoning the profession all together. Although Crisis Standards of Care (CSC) mean to guide the ethical allocation of scare resources, they frequently use scoring systems that are inherently biased. This raises concern for the application of equity in CSC. Data examining the impact of these protocols on health equity is scarce.Structural maltreatment in healthcare and inequities have led to cumulative harms, physiologic weathering and structural adversities for residents of the US. We propose the use of Restorative Justice (RJ) practices to develop CSC rooted in inclusion and equity. The RJ framework utilizes capacity building, circle process, and conferences to convene groups in a respectful environment for dialogue, healing, accountability, and action plan creation. A phased, non-faith-based facilitated RJ approach for CSC development (or revision) that fosters ethically equitable resource distribution, authentic community engagement, and accountability is shared. This opportunity for local, inclusive decision making and problem solving will both reflect the needs and give agency to community members while supporting the dismantling of structural racism and oppressive, exclusive policies.The authors are asking legislative and health system policy makers to adopt Restorative Justice practices for Crisis Standards of Care development. The US cannot afford to have additional reductions in inhabitant lifespan or the talent pool within healthcare.

Key Stakeholder Perspectives of Community Engagement Efforts and the Impact of the Covid-19 Pandemic.

The COVID-19 pandemic has disproportionally affected historically marginalized populations and their access to resources and healthcare. In times of crisis, authentic community engagement is more important than ever. This study was Phase 1 of a larger 3-phase study to conduct timely community-engaged research with community members to understand the disproportionate impact of COVID-19 on historically underserved communities. The objective of this work was to conduct key informant (KI) interviews (1) to understand community organizations perspectives about the role that large academic health centers play as they interface with community organizations to support their work, (2) to leverage KI's expertise to identify needs and assets within the community, and (3) to inform both Phase 2 (focus group qualitative research) and Phase 3 (survey) of the broader study. A total of 24 key informants were identified through purposeful sampling and one-on-one semi-structured interviews were conducted across 4 states using video conferencing. Barriers to access and lack of transparency were highlighted as major issues requiring reform-in particular, aggressive billing practices and insurance barriers exacerbated local distrust of medical institutions. KIs recognized the health institution's support for testing and vaccination during the COVID-19 pandemic, but noted other significant gaps in care, especially regarding mental health support. Although communication with the health institution was consistent for some KIs, others experienced unsustained communication efforts that hindered cooperation and relationship building. Leaders in the community as key stakeholders can provide unique insights into the challenges and potential solutions required to promote health equity, and foster understanding between local communities and healthcare institutions.

Advancing Integrated Models - emerging insights from a multi-site demonstration focused on implementing "next-generation" approaches to person-centered care for individuals with complex health and social needs.

Introduction:This interactive panel will engage participants in emerging approaches and lessons learned from integrated models promoting innovative, person-centered strategies to improve care for adults and children with complex health and social needs. It will describe approaches that prioritize individuals’ lived experience and community needs within a variety of health care settings and share challenges and opportunities to assist others in incorporating these approaches in their own environments.Background:Health-system-led efforts too often remain disconnected from the communities and social contexts in which their patients live. They are particularly disconnected from people who have experienced trauma and face complex health and unaddressed social needs, such as a lack of stable housing, food insecurity, and repeated exposure to violence. Yet they have tremendous potential to be vital partners in addressing health-related community needs and disparities -- from clinical care access and quality to housing, jobs, and food security. To improve health outcomes and foster health equity for individuals with complex needs, a small but growing number of leading health care systems are testing more holistic, person-centered approaches for delivering medical, behavioral health, and social services. These include integrated strategies to: address physical, behavioral health, and social needs; advance a trauma-informed approach to care; authentically collaborate with community partners; and recognize the role of race, power and privilege in driving health outcomes.Aims and objectives:• Share emerging approaches to more effectively deliver integrated, person-centered care to individuals with complex health and social needs.• Problem solve key challenges in authentic community engagement and addressing power imbalances at the individual, institutional, and community levels.• Share relevant resources to support health care providers in advancing care delivery that is more integrated, person-centered, and guided by the community served.Target audience:• Health, social service and behavioral health providers; community advocates; policymakers; payers; funders; researchersLearning/takeaways:• To be person-centered, integrated care must take into account the full context of individual and community experience.• Trauma-informed care and explicit efforts to acknowledge and address race, power and privilege are increasingly viewed as essential to a person-centered approach.• Investments of time and resources to build relationships and establish trust between communities and care systems are critical to address power imbalances and achieve better population health.• Promising strategies are emerging in an array of community settings that may be worthy of replication. Format- 60 mins:• Interactive moderated panel starting with an overview of programs that deliver integrated, person-centered care to individuals with complex health and social needs- 10 minutes• Complex patient vignette - 5 minutes• Program managers’ discussion of two innovative trauma-informed examples of health system transformation to integrated and person-centered care incorporating community voice and key challenges to implementation including (1) adopting a trauma-informed approach, (2) incorporating individual/community voice and decision making in program design, (3) engaging with community partners, and (4) addressing racial/ethnic/religious discrimination within the health care setting: 30 minutes;• Revisiting the patient vignette and program approaches to address challenges: 5 minutes;• Questions 10 minutes

Collective Impact Approaches to Promoting Community Health and Wellbeing in a Regional Township: Learnings for Integrated Care

This Perspective Paper explores the challenges of implementing local initiatives guided by the tenets of the Collective Impact (CI) approach. As such, it draws implications of CI for integrated health and social care efforts to improve and sustain health and social outcomes within a community-wide context, based on our efforts to deploy a CI intervention in the regional town of Muswellbrook, New South Wales (NSW) Australia. A program of health and wellbeing activities providing mental health and wellness messages and activities was implemented in the township over 2 years by the Family Action Centre (FAC), University of Newcastle, Australia. A key takeaway was the importance of authentic community engagement and active involvement as opposed to mere consultation.

Seeding Insights and Nourishing Change: a Case for Participatory Evaluation in Place-Based Community Food Systems

In the United States, achieving equitable food security requires innovative system-level solutions that address complex intersecting factors. Food insecurity is intricately connected to poverty and access to food, and has short- and long-term impacts on individual health, quality of life, and healthcare costs. Fostering food security demands innovation: new collaborations, approaches, and fresh measurement models that can address food insecurity at a systems level. Through a sophisticated place-based approach, Full Lives is a complex but promising food security community impact grantmaking strategy that leverages the resources of different partners, organizations, and components of the food supply within a concentrated geographical area. Furthermore, transformation of a community’s food system requires a combination of technical knowledge and authentic community engagement in order to effectively yield and measure community change. This case study provides an in-depth look at:

A Qualitative Exploration of Indicators of Health Equity Embeddedness Among Public Health Policy Advocacy Campaigns

There are socioeconomic and racial/ethnic health disparities that warrant policy change to advance health equity. The purpose of this qualitative study was to elucidate primary activities and/or tangible characteristics that indicate that a policy advocacy campaign has an embedded health equity focus. Researchers interviewed policy advocacy experts (n = 13) and campaign leaders (n = 9), transcribed audio recordings of interviews, and conducted a thematic analysis to examine health-equity-related processes within policy campaigns. Based on experiences of policy advocacy experts and campaign leaders, mostly within the Voices for Healthy Kids initiative, several objective aspects and activities were identified that indicate that a policy campaign, and the coalition that conducts the campaign, has an embedded health equity focus. It should be stressed that these activities are not intended to represent the extent of all campaign activities, only the subset of activities and aspects of a campaign that indicate a health equity orientation. Broadly, aspects identified were related to what had the campaign done to engage with the community, who in the community was providing input about direction of the campaign, and how had that community input been used. Authentic Community engagement was seen as the foundation of a campaign's health equity focus. A model synthesizing these findings is included in the results. A major strength of this study is that factors associated with health equity in campaign functioning are not typically assessed. These findings support identification of associated constructs to inform measurement development, and can help guide organizations, campaigns, and researchers working to advance health equity.

Key drivers of social accountability in nine Canadian medical schools*

A social accountability mandate for Canadian medical schools formally emerged in Canada with changes to accreditation standards in 2015. However, how social accountability is defined and operationalized within medical schools has transpired independently. Key enablers of social accountability in Canadian medical schools have been largely unexplored. This paper is the first of a two part series that seeks to explore drivers of social accountability in a sample of Canadian medical schools. Nine key drivers of social accountability emerged from the data including a unified vision, committed leadership, accreditation standards, champions of social accountability, authentic community engagement, community-based learning opportunities, a supportive organizational and governance structure, diversity within medical schools, and measurement of progress and outcomes. This is the first study of its kind to examine what is driving social accountability across Canadian medical schools. An appreciative inquiry approach highlights areas of progress for future work to focus and build upon. This paper presents the findings from part one of the study – exploring the themes emerging from key informant interviews with senior leaders. A second paper will dive into the broader perspectives of faculty, staff and students, to explore more fully the varying perspectives of social accountability within colleges.

Prioritizing Racial Equity: How Efforts to Advance Racial Equity Helped Shape the W.K. Kellogg Food & Fitness Initiative.

Racial equity is closely linked to principles of fairness and justice. It is distinct from the concept of racial equality. Community engaged strategies aimed at creating racial equity have generated effective ways to dismantle structural racism-the racialized policies and practices that have shaped economic and social institutions in the United States throughout its history. In crafting the Food & Fitness Initiative, the W.K. Kellogg Foundation made advancing racial equity a top priority. By doing so, it encouraged the community partnerships funded under the initiative to apply theories of expanding equity to real-world situations in order to reduce racial disparities in their neighborhoods. This article reviews the methods that were employed over the course of the initiative to support the partnerships with their efforts. It highlights three key components: (1) being intentional about maintaining a focus on racial equity, (2) concentrating on changing policies and systems, and (3) consistently incorporating meaningful and authentic community engagement into the work. The importance of making the concept of equity concrete and measurable is explored. Furthermore, the article discusses strategies that strengthened the capacity of the partnerships to navigate the policy-making process and to build leadership and shift power to community residents. The article concludes by detailing measures that could guide future efforts to make racial equity a priority and emphasizes that doing so is crucial given the rapid demographic shifts underway across the country.

Grassroots festival keeps city alive during severe drought

PurposeThis paper aims to discuss the role of a grassroots initiative in engaging local people in an innovative place-making fringe festival. Festivals such as the Carnival of Flowers are a major tourism event for regional cities like Toowoomba and contribute to place-making through marketing and engagement. Within the professional management of such events, there exists space for innovation and genuine community involvement, which can assist in authentically reflecting place identity. Avant Garden (2007-2008) models a successful grassroots fringe festival, initiated by community members in response to the challenge of long-term drought. Avant Garden engaged locals and tourists in a positive re-imagining of place via site-specific public artworks generated by the community.Design/methodology/approachA survey of 504 visitors to Toowoomba’s public gardens during the first weekend of the 2007 Carnival of Flowers examined how Avant Garden was received by the community.FindingsThe paper suggests that fringe festivals can provide place-making capacity in broadening festivals as an expression of local identity. Fringe festivals can allow authentic community engagement within a mainstream festival and can indicate longer-term innovations to place branding.Practical implicationsThe paper includes implications for festival managers about effective ways to engage community in grassroots initiatives which reflect innovation, authenticity and greater diversity.Originality/valueThe paper provides a study of a visual arts fringe festival in the context of place management. The project described allows a “bottom up” approach to engaging the local community which provides authenticity and broadens the scope of an existing mainstream garden festival.

From “Academic Projectitis” to Partnership: Community Perspectives for Authentic Community Engagement in Health Professional Education

Health professional education (HPE) has taken a problem-based approach to community service-learning with good intentions to sensitize future health care professionals to community needs and serve the underserved. However, a growing emphasis on social responsibility and accountability has educators rethinking community engagement. Many institutions now seek to improve community participation in educational programs. Likewise, many Canadians are enthusiastic about their health care system and patients, who are “experts by lived experience,” value opportunities to “give back” and improve health care by taking an active role in the education of health professionals. We describe a community-based participatory action research project to develop a mechanism for community engagement in HPE at the University of British Columbia (UBC). In-depth interviews and a community dialogue with leaders from 18 community-based organizations working with vulnerable populations revealed the shared common interest of the community and university in the education of health professionals. Patients and community organizations have a range of expertise that can help to prepare health practitioners to work in partnership with patients, communities, and other professionals. Recommendations are presented to enhance the inclusion of community expertise in HPE by changing the way the community and university engage with each other.

The Power of Parent Engagement: Sociocultural Considerations in the Quest for Equity

This article explores the difference between parental involvement, where parents' activity levels at school are primarily structured by schools, and parental engagement, where parents have a more active voice in how they take part in what goes on in schools. This difference is underscored as a means of illuminating ways of addressing the issue of racialized disproportionality in special education and acts of school discipline, particularly in urban settings. We highlight the ways schools need to transform the often microaggresively oppressive ways parents are invited into their children’s education process, as well as the way schools value the knowledge parents bring. Effective ways of activating parental engagement as a means of creating authentic community engagement are also examined. Additionally, recommendations are provided on how to prepare novice teachers to develop plans and goals alongside parents in order to help these new educators develop a pedagogical stance that authentically values the importance of one of schools’ most important stakeholders–parents.

"It's all about trust": reflections of researchers on the complexity and controversy surrounding biobanking in South Africa.

BackgroundBiobanks are precariously situated at the intersection of science, genetics, genomics, society, ethics, the law and politics. This multi-disciplinarity has given rise to a new discourse in health research involving diverse stakeholders. Each stakeholder is embedded in a unique context and articulates his/her biobanking activities differently. To researchers, biobanks carry enormous transformative potential in terms of advancing scientific discovery and knowledge. However, in the context of power asymmetries in Africa and a distrust in science born out of historical exploitation, researchers must balance the scientific imperative of collecting, storing and sharing high quality biological samples with obligations to donors/participants, communities, international collaborators, regulatory and ethics authorities. To date, researcher perspectives on biobanking in South Africa have not been explored and documented.MethodsIn-depth qualitative interviews were conducted with a purposive sample of 21 researchers – 8 in the Western Cape, 3 in Gauteng and 10 in Kwa-Zulu Natal. Interviews lasted approximately 40–60 min and were audiotaped with consent. Thematic analysis of the transcribed interviews was conducted by the co-authors.ResultsResearchers articulated serious concerns over standardised regulatory approaches that failed to consider the heterogeneity of biobanks. Given that biobanks differ considerably, guidelines and RECs need to stratify risk accordingly and governance processes and structures must be flexible. While RECs were regarded as an important component of the governance structure researchers expressed concern about their expertise in biobanking. Operational management of biobanks was regarded as an ethical imperative and a pre-requisite to building trust during consent processes. While broad general consent was preferred, tiered consent was thought to be more consistent with respect for autonomy and building trust. Material Transfer Agreements (MTAs) were often lacking when biosamples were exported and this was perceived to impact negatively on trust. On the other hand, researchers believed that authentic community engagement would help to build trust.ConclusionBuilding trust will best be achieved via a system of governance structures and processes that precede the establishment of a biobank and monitor progress from the point of sample collection through to future use, including export. Such governance structures must be robust and must include comprehensive national legislation, policy and contextualised guidelines. Currently such governance infrastructure appears to be lacking in many African countries including South Africa. Capacity development of all stakeholders including REC members will enhance expeditious and efficient review of biobanking protocols which in turn will reinforce trust in the researcher-donor relationship. Science translation and community engagement in biobanking is integral to the success of biobanking in South Africa.Electronic supplementary materialThe online version of this article (doi:10.1186/s12910-016-0140-2) contains supplementary material, which is available to authorized users.