INNOVATE Research: Impact of a workshop to develop researcher capacity to engage youth in research

BackgroundEngaging youth in research provides substantial benefits to research about youth‐related needs, concerns and interventions. However, researchers require training and capacity development to work in this manner.MethodsA capacity‐building intervention, INNOVATE Research, was co‐designed with youth and adult researchers and delivered to researchers in three major academic research institutions across Canada. Fifty‐seven attendees participated in this research project evaluating youth engagement practices, attitudes, perceived barriers, and perceived capacity development needs before attending the intervention and six months later.ResultsThe intervention attracted researchers across various career levels, roles and disciplines. Participants were highly satisfied with the workshop activities. Follow‐up assessments revealed significant increases in self‐efficacy six months after the workshop (P = .035). Among possible barriers to youth engagement, four barriers significantly declined at follow‐up. The barriers that decreased were largely related to practical knowledge about how to engage youth in research. Significantly more participants had integrated youth engagement into their teaching activities six months after the workshop compared to those who were doing so before the workshop (P = .007). A large proportion (71.9%) of participants expressed the need for a strengthened network of youth‐engaged researchers; other future capacity‐building approaches were also endorsed.ConclusionsThe INNOVATE Research project provided improvements in youth engagement attitudes and practices among researchers, while lifting barriers. Future capacity‐building work should continue to enhance the capacity of researchers to engage youth in research. Researchers notably pointed to the need to establish a network of youth‐engaged researchers to provide ongoing, sustainable gains in youth engagement.     

Patients as partners in health research: A scoping review

BackgroundThe role of patient involvement in health research has evolved over the past decade. Despite efforts to engage patients as partners, the role is not well understood. We undertook this review to understand the engagement practices of patients who assume roles as partners in health research.MethodsUsing a recognized methodological approach, two academic databases (MEDLINE and EMBASE) and grey literature sources were searched. Findings were organized into one of the three higher levels of engagement, described by the Patient and Researcher Engagement framework developed by Manafo. We examined and quantified the supportive strategies used during involvement, used thematic analysis as described by Braun and Clarke and themed the purpose of engagement, and categorized the reported outcomes according to the CIHR Engagement Framework.ResultsOut of 6621 records, 119 sources were included in the review. Thematic analysis of the purpose of engagement revealed five themes: documenting and advancing PPI, relevance of research, co‐building, capacity building and impact on research. Improved research design was the most common reported outcome and the most common role for patient partners was as members of the research team, and the most commonly used strategy to support involvement was by meetings.ConclusionThe evidence collected during this review advanced our understanding of the engagement of patients as research partners. As patient involvement becomes more mainstream, this knowledge will aid researchers and policy‐makers in the development of approaches and tools to support engagement.Patient/User InvolvementPatients led and conducted the grey literature search, including the synthesis and interpretation of the findings.     

Human embryonic stem cell science and policy: The case of Iran

The paper is based on a large qualitative study of ethics, policy and regulation of human embryonic stem cell (hESC) science in Iran. This case study in five academic research centres used semi-structured interviews to examine in depth the views of stem cell scientists, embryologists and ethics committee members on hESC research policy in this Shia Muslim country. Although Iran's policy approach has been considered 'intermediate', what is described here seems to be a 'more flexible' policy on hESC science. This article describes three arguments to explain why Iran has shaped such a policy. These are: (1) a flexibility of the Shia tradition has allowed for hESC science; (2) permissive policy related to other fields of biomedicine, such as new assisted reproductive technologies, facilitated approval of hESC research; and (3) a lack of public debate of bioscience in Iran influences how its hESC research policy is perceived. Based on the empirical data, this paper then expands and refines the conceptual bioethical basis for the co-production of science, policy, and society in Iran. The notion of co-production implies that scientists, policy-makers, and sometimes other societal actors cooperate in the exchange, production, and application of knowledge to make science policy.     

Urban HEART Detroit: a Tool To Better Understand and Address Health Equity Gaps in the City

The Urban Health Equity Assessment Response Tool (Urban HEART) combines statistical evidence and community knowledge to address urban health inequities. This paper describes the process of adopting and implementing this tool for Detroit, Michigan, the first city in the USA to use it. The six steps of Urban HEART were implemented by the Healthy Environments Partnership, a community-based participatory research partnership made up of community-based organizations, health service providers, and researchers based in academic institutions. Local indicators and benchmarks were identified and criteria established to prioritize a response plan. We examine how principles of CBPR influenced this process, including the development of a collaborative and equitable process that offered learning opportunities and capacity building among all partners. For the health equity matrix, 15 indicators were chosen within the Urban HEART five policy domains: physical environment and infrastructure, social and human development, economics, governance, and population health. Partners defined the criteria and ranked them for use in assessing and prioritizing health equity gaps. Subsequently, partners generated a series of potential actions for indicators prioritized in this process. Engagement of community partners contributed to benchmark selection and modification, and provided opportunities for dialog and co-learning throughout the process. Application of a CBPR approach provided a foundation for engagement of partners in the Urban HEART process of identifying health equity gaps. This approach offered multiple opportunities for discussion that shaped interpretation and development of strategies to address identified issues to achieve health equity.     

Patients as qualitative data analysts: Developing a method for a process evaluation of the ‘Improving the Safety and Continuity of Medicines management at care Transitions’ (ISCOMAT) cluster randomised control trial

BackgroundHow to meaningfully partner with patients as data analysts remains obscure. A process evaluation of the ‘Improving the Safety and Continuity Of Medicines management at care Transitions’ (ISCOMAT) cluster randomised control trial of an intervention for improving medicines use for people living with heart failure is being conducted. The intervention includes patient held information on heart medicines and care, enhanced communication between hospital and community pharmacists, and increased engagement of community pharmacists with patient care post‐hospital discharge. ISCOMAT patients living with heart failure were interviewed about experiences with the intervention. We sought to gain insights from patients on data collected to enhance our understanding of experiences with the intervention.ObjectiveTo develop a method for involving patients as analysts of qualitative data in a process evaluation.DesignPatients and researchers co‐analysed qualitative data. A framework method was applied involving; familiarisation, coding, developing an analytical framework and interpretation. The process was facilitated through home working and a workshop with a training component.ResultsThe co‐designed framework enabled researchers to map all further patient interview data. Patients'' specialist knowledge enhanced understanding of how the ISCOMAT intervention can be best implemented.ConclusionsPatients’ unique experiences can enhance validity and rigour in data analysis through sharing their interpretations of qualitative data. The involvement process is crucial in elucidating knowledge and avoiding tokenism. As analysts, patients gain an appreciation of research processes, building trust between researchers and patients. Group dynamics and involving patients throughout the whole research process are important considerations.     

Experiences of self‐care during the COVID‐19 pandemic among individuals with rheumatoid arthritis: A qualitative study

ObjectivesThis study aimed to explore the impact of the coronavirus disease 2019 (COVID‐19) pandemic on self‐care of individuals living with rheumatoid arthritis (RA).MethodsGuided by a constructivist, qualitative design, we conducted one‐to‐one in‐depth telephone interviews between March and October 2020 with participants with RA purposively sampled for maximum variation in age, sex and education, who were participating in one of two ongoing randomized‐controlled trials. An inductive, reflexive thematic analysis approach was used.ResultsTwenty‐six participants (aged 27–73 years; 23 females) in British Columbia, Canada were interviewed. We identified three themes: (1) Adapting to maintain self‐care describes how participants took measures to continue self‐care activities while preventing virus transmissions. While spending more time at home, some participants reported improved self‐care. (2) Managing emotions describes resilience‐building strategies such as keeping perspective, positive reframing and avoiding negative thoughts. Participants described both letting go and maintaining a sense of control to accommodate difficulties and emotional responses. (3) Changing communication with health professionals outlined positive experiences of remote consultations with health professionals, particularly if good relationships had been established prepandemic.ConclusionThe insights gained may inform clinicians and researchers on ways to support the self‐care strategies of individuals with RA and other chronic illnesses during and after the COVID‐19 pandemic. The findings reveal opportunities to further examine remote consultations to optimize patient engagement and care.Patient or Public ContributionThis project is jointly designed and conducted with patient partners in British Columbia, Canada. Patient partners across the United Kingdom also played in a key role in providing interpretations of themes during data analysis.     

Adolescent and young adult patients as co‐researchers: A scoping review

BackgroundAs part of a research project aimed at evaluating a hospital‐based adolescent transition programme, we asked ourselves what is known about the ethical and methodological challenges of research involving adolescent patients as co‐researchers. The aim of our review was to summarize empirical evidence and identify knowledge gaps about the involvement of young patients as co‐researchers.MethodsWe conducted a scoping review through searches in MEDLINE, EMBASE, PsychINFO, AMED.ResultsWe found reports of young patients being actively engaged as co‐researchers in any stage of a research project, although commonly they were not involved in every stage. Including young patients as co‐researchers is resource demanding and time‐consuming. Involving young patients as co‐researchers contributes to the fulfilment of their right to participation and may improve the relevance of research. Benefits for the young co‐researcher include empowerment, skills building and raised self‐esteem. Few authors go into detail about ethical considerations when involving young co‐researchers. None of the included articles discuss legal considerations.Discussion and conclusionNo lists of recommendations are given, but recommendations can be deduced from the articles. There is need for time, funding and flexibility when including young patients as co‐researchers. Knowledge gaps concern legal and ethical dilemmas of including a vulnerable group as co‐researchers. More reflection is needed about what meaningful participation is and what it entails in this context.Patient or Public ContributionThis review is part of a research project where the hospital youth council has been involved in discussions of focus area and methods.     

The possibility of addressing epistemic injustice through engaged research practice: reflections on a menstruation related critical health education project in South Africa

Abstract

Questions of epistemic injustice in relation to community engagement activities have rarely been interrogated. While it is often purported that when academics and community members are involved in the co-creation of knowledge through a mutually beneficial exchange of resources and expertise, all participants emerge as active stakeholders in the knowledge production process, little research has been done on how academics or community partners experience these processes from an epistemological perspective. Does the proposed process of repositioning research participants in community engagement praxis allows for a new power dynamic to emerge in research such that all parties genuinely share equal responsibility for determining the processes and outcomes of the knowledge production process? Do such activities allow for an epistemological shift away from traditional knowledge construction paradigms to ones in which the democratisation of knowledge is prioritised? Does such an epistemological shift in the knowledge construction paradigm extend beyond simply the knowledge construction process to interpersonal relationships between academics and community members who see themselves as co-protagonists in a shared project? In grappling with these questions I will draw on my own, personal experiences working in a menstruation related engaged research critical health education project in South Africa, to discuss the complexities of whether and how the amelioration of epistemic injustices are being served through community engagement activities.     

How To Build an Integrated Neighborhood Approach to Support Community-Dwelling Older People?

Background:Although the need for integrated neighborhood approaches (INAs) is widely recognized, we lack insight into strategies like INA. We describe diverse Dutch INA partners’ experiences to provide integrated person- and population-centered support to community-dwelling older people using an adapted version of Valentijn and colleagues’ integrated care model. Our main objective was to explore the experiences with INA participation. We sought to increase our understanding of the challenges facing these partners and identify factors facilitating and inhibiting integration within and among multiple levels.Methods:Twenty-one interviews with INA partners (including local health and social care organizations, older people, municipal officers, and a health insurer) were conducted and subjected to latent content analysis.Results:This study showed that integrated care and support provision through an INA is a complex, dynamic process requiring multilevel alignment of activities. The INA achieved integration at the personal, service, and professional levels only occasionally. Micro-level bottom-up initiatives were not aligned with top-down incentives, forcing community workers to establish integration despite rather than because of meso- and macro-level contexts.Conclusions:Top-down incentives should be better aligned with bottom-up initiatives. This study further demonstrated the importance of community-level engagement in integrated care and support provision.     

Youth and family engagement in childhood disability evidence syntheses: A scoping review

Within the last decade, stakeholder engagement in research has become increasingly popular in childhood disability research; however, literature on the engagement of youth with neurodisabilities and their families in evidence syntheses is underdeveloped. Involving patients as partners in research has the potential to improve applicability and relevance of the research and benefit patient partners (e.g. enhanced self-esteem, increased research knowledge and skills); however, the methods, challenges, outcomes and recommendations of engaging youth with neurodisabilities and their families in evidence syntheses are unknown. Two parents of youth with complex disability needs were engaged as partners throughout this review. Following methods outlined by Arksey and O'Malley (2005), the primary research question in this scoping review is twofold: (i) what activities have youth with neurodisabilities and their families been engaged in as part of evidence syntheses and (ii) what were the outcomes of that engagement? After full text review of 369 articles, nine articles were included. Youth and families were engaged prior to the evidence synthesis and at every stage in the project, most often during data analysis where they contextualized the findings. Youth and family engagement were not formally evaluated; however, positive outcomes were reported by parents and researchers. Challenges such as increased time, sustaining engagement, and parents' dissatisfaction with their level of involvement were reported. Recommendations centred around providing partners with information, building relationships via social media, and openly communicating about roles, feedback and logistics. Childhood disability researchers should be aware of how they can increase engagement opportunities at all stages of evidence syntheses and how they might improve accessibility for youth with neurodisabilities and their families. Further research is needed to solidify a unified framework for conduct and reporting of youth and family engagement in evidence syntheses.     

Developing a Women's Thought Collective methodology for health research: The roles and responsibilities of researchers in the reflexive co-production of knowledge

Background

Co-produced research holds enormous value within the health sciences. Yet, there can be a heavy focus on what research participants think, do and know; while the researcher's responsibility to explore and re/work their own knowledge or praxis tends to escape from view. This is reflected in the limited use of co-production to explore broad structural distributions of health and risk(s). We argue this missed opportunity has the potential to unfold as what Berlant calls a ‘cruel optimism’, where something desirable becomes an obstacle to flourishing and/or produces harm. We explore challenges to involving lay populations meaningfully in health research amidst a neoliberal cultural landscape that tends to responsibilise people with problems they cannot solve.

Methods and Findings

Drawing together principles from hermeneutic and feminist philosophy, we develop a novel methodology for co-producing research about determinants of health and health risk (using a case study of alcohol consumption as an example) that centres on what researchers do, know and think during research: Women's Thought Collectives.

Discussion

Keeping the constructed nature of social systems—because they shape ideas of value, expertise and knowledge—in view during co-produced research illuminates the potential for cruel optimisms within it. Such reflexive awareness carves out starting points for researchers to engage with how social hierarchies might (tacitly) operate during the co-production of knowledge. Our work has broad utility for diverse population groups and provides important considerations around the roles and responsibilities for reflexive co-production of knowledge at all levels of health systems.

Patient or Public Contribution

The development of these ideas was sparked by working with lay participants during the Women's Thought Collectives for Kristen Foley's doctoral research 2021–2023, but undertaken without their direct involvement—in accordance with the responsibilities of researchers in the reflexive co-production of knowledge. Forthcoming publications will address the outcomes and processes of this work.     

Co-Production at the Strategic Level: Co-Designing an Integrated Care System with Lay Partners in North West London,England

In North West London, health and social care leaders decided to design a system of integrated care with the aim of improving the quality of care and supporting people to maintain independence and participation in their community. Patients and carers, known as ‘lay partners,’ were to be equal partners in co-production of the system.Lay partners were recruited by sending a role profile to health, social care and voluntary organisations and requesting nominations. They formed a Lay Partners Advisory Group from which pairs were allocated to system design workstreams, such as which population to focus on, financial flow, information technology and governance. A larger and more diverse Lay Partners Forum provided feedback on the emerging plans.A key outcome of this approach was the development of an integration toolkit co-designed with lay partners. Lay partners provided challenge, encouraged innovation, improved communication, and held the actions of other partners to account to ensure the vision and aims of the emerging integrated care system were met.Key lessons from the North West London experience for effective co-production include: recruiting patients and carers with experience of strategic work; commitment to the vision; willingness to challenge and to listen; strong connections within the community being served; and enough time to do the work. Including lay partners in co-design from the start, and at every level, was important. Agreeing the principles of working together, providing support and continuously recruiting lay representatives to represent their communities are keys to effective co-production.     

Ethical sensitivity in co-production: Openness and doubt when young women participate in research

Abstract

During the past years, co-production in medical and health related research has gained more focus. The purpose is to ensure that researchers – and the individuals that the research is relevant and has consequences for – will develop and produce the research, and accordingly also, the results together. In our understanding, the eventual success of co-production in research has to be based on some sort of sensitivity to and negotiation as to the perspectives and categories describing the research theme. In this article, based on empirical data from interviews with adolescents participating in treatment for lifestyle change, we explore the significance of the researchers' sensitivity for adolescents' resistance during the interview process. We argue that this sensitivity is embodied and requires ethical reflection helping the researcher to discover ethical moments. By being sensitive as to participants' resistance in the interview situation, we argue that new knowledge is thereby developed.     

The HIV Risk Reduction Needs of Homeless Women in Los Angeles

BackgroundSubstance use, housing instability, and transactional sex all contribute to HIV risk engagement among homeless women. Because of the increased risk of HIV among homeless women, this study sought to understand the context of sexual behaviors and condom use among homeless women and elucidate modifiable factors that can be targeted by interventions.MethodsHomeless women (n = 45) participated in focus groups (n = 6) at shelters throughout Los Angeles County. Thematic analyses revealed that similar to other high-risk women, homeless women engage in sex with multiple types of partners (steady, casual, and transactional).FindingsOur findings indicate that, similar to use among other high-risk women, condom use by homeless women varied by type of partner. Substance use also contributed to condom non-use. In a departure from previous research, homeless women reported overarching feelings of hopelessness. Participants spoke of hopelessness contributing to risk engagement, specifically the number of ongoing stressors experienced because of homelessness contributing to despair. Without acknowledgement of this unique quality of homelessness, women felt their risk reduction needs would never truly be understood.ConclusionsInterventions involving homeless women should include self-esteem building, acknowledgment and use of inherent resilience qualities gained during homelessness, respect for current knowledge and skills, and an exploration of when women choose to trust their partners and how they make safer sex choices.     

Research Priorities for Fertility and Conception Research as Identified by Multidisciplinary Health Care Practitioners and Researchers

The Robinson Research Institute of the University of Adelaide convened a multidisciplinary group of n = 33 clinicians, researchers and representatives of government organisations on the 2 October 2014 for a workshop entitled “Promoting fertility and healthy conception. How do we generate greater reproductive health awareness?” The key aim of the workshop was to assess the body of knowledge that informs clinical practice and government policy, and to identify questions and additional information needed by health practitioners and government representatives working in the field of reproductive health and to frame future research and policy. The workshop identified topics that fell mostly into three categories: lifestyle-related, societal and biological factors. The lifestyle topics included nutrition and diet, exercise, obesity, shift work and other factors deemed to be modifiable at the level of the individual. The societal topics included discussions of matters that are structural, and resistant to change by individuals, including specific ethical issues, social disadvantage, government and educational policies. The biological factors are intrinsic physical states of the individual, and included many factors where there is a dense body of scientific knowledge which may not be readily accessible in less academic language. This workshop thus provided an opportunity to identify further actions that could be undertaken to meet the needs of diverse organisations and groups of professionals with an interest in human fertility. Since so many factors in our social and biological environment can impact fertility and preconception health, it is imperative to involve many disciplines or levels of government or societal organisations that have not traditionally been involved in this area.     

Developing and implementing a targeted health-focused climate communications campaign in Ontario—#MakeItBetter

SettingPublic health practitioners are called to effectively communicate with the public on climate change. The climate crisis requires swift action that starts with public awareness of climate-related health impacts and leads to public support for individual, community and systemic actions to mitigate and adapt to climate change.InterventionThis paper discusses learnings about public opinion research and communication strategies and how a health-focused climate communication campaign—#MakeItBetter—could help to increase awareness and engage new audiences, including public health partners, in conversations about climate change in order to reduce climate-related health impacts for current and future generations. The #MakeItBetter campaign was grounded in evidence-informed messaging, being sensitive to health inequities. Emerging research and pre-campaign testing suggest that framing climate change as a health issue is a promising practice.OutcomesThe #MakeItBetter campaign appeals to parents/caregivers to learn more about climate-related health impacts, take protective action for children and support multi-level climate action. The campaign launch secured 89 news stories, including multicultural media coverage. Longer-term evaluation is required to determine the campaign’s effectiveness in building public support for climate action.ImplicationsAn innovative approach to climate communication that draws on the intersections between behavioural and climate sciences and engages in multi-sectoral collaboration can spur both climate action and health protection, aiding public health practitioners and partners in effectively communicating the urgency for climate action. More work is needed to support communication on climate change as an inequity multiplier and promote climate action and community resilience for health equity co-benefits.     

Enhancing Stewardship of Community-Engaged Research Through Governance

Objectives. We explored the relationship of community-engaged research final approval type (tribal government, health board, or public health office (TG/HB); agency staff or advisory board; or individual or no community approval) with governance processes, productivity, and perceived outcomes.Methods. We identified 294 federally funded community-engaged research projects in 2009 from the National Institutes of Health’s Research Portfolio Online Reporting Tools, Centers for Disease Control and Prevention’s Prevention Research Centers, and Native American Research Centers for Health databases. Two hundred (68.0%) investigators completed a survey about governance processes and productivity measures; 312 partners (77.2% of 404 invited) and 138 investigators (69.0% of 200 invited) completed a survey about perceived outcomes.Results. Projects with TG/HB approval had increased likelihood of community control of resources (odds ratios [ORs] ≥ 4.80). Projects with other approvals had decreased likelihood of development or revision of institutional review board policies (ORs ≤ 0.37), having written agreements (ORs ≤ 0.17), and agreements about publishing (ORs ≤ 0.28), data use (ORs ≤ 0.17), and publishing approval (ORs ≤ 0.14).Conclusions. Community-engaged research projects with TG/HB approval had strong stewardship of project resources and agreements. Governance as stewardship protects community interests; thus, is an ethical imperative for communities, especially native communities, to adopt.Researchers working with native communities (American Indian, Alaska Native, and Native Hawaiian peoples), other racial/ethnic minority communities, or other communities facing disparities that experience similar mistrust for past research issues, health inequities (e.g., gays and lesbians or people with disabilities), or both, have advocated the use of participatory research to enhance community health.1–6 Such approaches include tribal participatory research, community-based participatory research, and participatory action research and are generally grouped as community-engaged research (CEnR). There is a continuum of engagement,7 but CEnR that involves collaborative partnership and shared leadership between community members and (academic) researchers in all phases of the research can build capacity of all partners, create research that benefits the community, and enhance translation of research findings to the community.8–13 These approaches have attraction because they can advance cocreation of the research, contribute culturally centered methods, and foster research capacity.1,2,14,15Although CEnR approaches have appeal, they still require governance to provide protection, oversight, guidance, legitimacy, and community benefit. Governance over CEnR is complex and involves numerous practices and policies.16,17 Historically, oversight responsibilities have been held by institutional review boards (IRBs) that uphold federal standards established by the Office for Human Research Protections.18,19 Use of IRBs (e.g., university IRBs or Indian Health Service IRBs) for research oversight characterizes governance as regulation as the focus is on balancing the needs of protection of individuals from harm while trying to foster scientific innovation. However, when research partners consider other functions of governance alongside legal regulation (e.g., use of tribal governments or community-based review boards), the quality of research can be strengthened and more attention paid to the benefits and harm of the research for the community.20–22In recent years, policymakers, CEnR researchers, and community organizations have advocated a broader perspective of governance, one that can be characterized as stewardship of research. Governance as stewardship enhances protection of the community, helps to foster research partnerships and appropriate access to and approval of research by community bodies, ensures benefit for the community, provides legitimacy of the research, shares responsibility for the research, provides community control, and builds research capacity in communities.20–23 For example, when native communities steward research, new patterns emerge between academic and community partners that might involve (1) community and academic partners requiring and committing to oversight by a tribal council or community board, (2) review boards or tribal governments insisting the that project demonstrate benefits to the community (not just individuals), (3) all partners committing to tribal ownership of the data, and (4) all partners working to use data and disseminate findings following tribal review.2,24–27Although nontribal communities do not have a tribal council for formal governance, they establish various governance mechanisms such as oversight by faith-based networks or leaders, health boards or public health offices, project advisory boards, or community partner boards.21,28–30 Stewardship by these governing entities may involve (1) academic partners that engage in collaboration with the community to produce the research, (2) projects that use culturally relevant research designs and instruments to enhance the quality of the research, (3) projects that hire community members on research projects to build research capacity, and (4) academic partners that encourage community engagement and participation.2–4,21,28 In both native and nonnative communities, stewardship practices lead to enhanced trust of the research process by community partners, relationships that balance community and academic institutional power, IRB processes that reflect community interests and not just biomedical interests, inclusion of cultural frameworks that fit the community, and academic members committed to community engagement.21,28,31Enhancing stewardship of research through governance has focused on several activities. First, increasingly, native and nonnative communities are asserting their roles in overseeing research by developing community IRBs and other forms of research oversight.23,32,33 Second, research review can protect community knowledge by establishing protocols for oversight and can affirm tribal or community authority to approve and guide research that will benefit the community.21,22,28–30,33,34 Third, the National Congress of American Indians35–37 asserts that tribes, as sovereign nations, have regulatory authority over research that takes place on tribal lands and with tribal citizens. Several tribes have exercised governance by establishing research codes, research review boards, and formal agreements with research institutions, and some intertribal entities have established research oversight in urban and cross-tribal regions.33,38Despite the expanded view of ethical issues within CEnR projects and an upsurge in community governance expectations from communities and some funders, there has been little research that has examined the role of governance in research specifically, as well as concerns that these processes might inhibit research. Some researchers and policy analysts suggest that tribal research review is perceived as slowing or blocking research development and dissemination.25,35 A tension related to data ownership to ensure risks and benefits are considered for communities, individual research participants, and research funders also exists.What has been lacking in these discussions to date has been research about the associations of governance with agreements, control of resources, productivity, and perceived outcomes of CEnR. Agreements are the accepted standards or protocols for the research partnership such as mission and objectives, group dynamics, and dissemination.12,39 Control of resources is whether the community, academic institution, or both hire personnel and manage project resources.12,40 Research productivity measures include garnering funding, disseminating scholarship, developing new measures centered in cultural or community perspectives, and establishing new research regulation.3,23,28,30 These measures are important as the need to generate, disseminate, and regulate new knowledge and practices are core goals of funding agencies and, to a lesser extent, communities.Perceived outcomes of CEnR focus on the contributions to health, and encompass changes in power relations, sustainability, community transformation, improved health of the community, and capacity building for individuals and agencies.12 These outcomes are important as they are health outcomes or factors that enhance public health. Ultimately, the success of a CEnR project is determined by research productivity and improvement of health outcomes.The notion of governance also has often been a source of mystery and conflict in research partnerships. We sought to foster understanding and provide context around governance as “stewardship” in research partnerships in both native and nonnative communities by focusing on the type of final approval of CEnR—the body or individual who endorsed and approved the project on behalf of the community and allowed it to continue. This approval is a key factor for legitimacy, community involvement, oversight, and guidance of the project.26,35 Furthermore, the type of approval has not been studied, whereas the general oversight of research ethics through community or tribal IRBs has garnered recent research focus.21,33,38 Examining the type of approval allows an exploration of how governance as stewardship balances needs for authority and accountability, control and capacity building, and protection and benefits.