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To select the above DE lncRNAs for validation, it was taken in consideration one of the major characteristics of lncRNA, that is, high heterogeneous expression across the same tumor and even the same cell line. Long noncoding RNA’s expression is tightly regulated by a wild range of cellular responses and, due to the markedly lower transcriptional levels of lncRNAs, the expression variability inside the same group of patients is expected. Taking this aspects in consideration, from the top 25 positively DE lncRNAs and from the top 20 negatively DE lncRNAs, it were selected for validation those lncRNAs with low adjusted p-values to avoid this variability, especially in the comparison BRAFWT × BRAFV600E tumor, which is the focus of this research. As another desirable characteristic, most lncRNAs selected, presented at least in one group (normal thyroid, PTC, BRAFWT or BRAFV600E) a median expression greater than 1 RPKM (reads per kilo base per million mapped reads). Added to that, it was given preference for those lncRNAs without isoforms (seen that many lncRNAs have annotation errors) and that present at least 2 exons, which are more stable and would allow the PCR primers to be located in different exons. | study | 100.0 |
To identify the possible target genes of the selected (Fig. 1D and E) differentially expressed lncRNAs via cis- or trans-regulatory effects, two previously described approaches were used36, 54. The genes transcribed within a 10 kb window upstream or downstream of lncRNAs were considered as cis-target genes36, 54. The second method was used to identify trans-targets and is based on mRNA and microRNA sequence complementarity with the query lncRNA. For mRNA interactions we used a pre-computed database that catalogs the predicted lncRNA–RNA interactions55, where the accessible regions of the query lncRNA and possible targets (mRNA/lncRNA) are extracted, the binding energies of pairs of sequences (target and query) around the seed matches are evaluated and the minimum interaction energy of the joint secondary structures is calculated55. The 500 predicted targets (mostly constituting repeated targets with different interaction sites) with the lowest minimum free energies under −20 kcal/mol were taken in consideration for downstream analysis. For lncRNA and microRNA interaction prediction it was used rna22, a method for identifying microRNA-binding sites and their corresponding heteroduplexes56. It were selected those microRNAs with a folding energy lower than −20 kcal/mol. | study | 100.0 |
As interaction prediction methods are susceptible to error and to minimize this, we compared the predicted targets of the differentially expressed lncRNAs with the differentially expressed mRNAs and microRNAs36 calculated with the TCGA patients, because we consider that the targets of DE lncRNAs would possibly be DE in TCGA analysis. With this approach, we intended to enrich our analysis for targets with a greater propensity to be occurring biologically. | study | 100.0 |
Indirect validated targets of the DE lncRNAs were loaded into the Database for Annotation, Visualization and Integrated Discovery (DAVID)57, which returned the gene ontology of the query genes and identified enriched Kyoto Encyclopedia of Genes and Genomes (KEGG) pathways58. miRSystem59 was used to calculate enriched pathways based on the predicted targets of the query microRNAs, which in this case, were the DE microRNAs in both conditions (Normal × Tumor and WT × BRAFV600E). For protein-protein interaction network it was used Genemania60. | study | 100.0 |
Climate change adaptation research seeks to identify and evaluate policies, measures, and strategies to reduce vulnerability and enhance adaptive capacity to climate change impacts.1 The importance of engaging communities and decision makers in this work is now widely recognized.2, 3, 4 On normative grounds, this is part of good governance, and on instrumental grounds, it is believed to be necessary for effective adaptation policy implementation and programming.5, 6 Indeed, adaptation has been described as a ‘wicked problem,’ involving complex interactions among societal and natural factors, where facts are uncertain, values in dispute, and decisions urgent.7 In this context, there are rarely single adaptation solutions; rather, adaptation involves multiple trade‐offs and spans multiple institutions and scales, with diverse perspectives on what constitutes ‘good’ adaptation.7, 8, 9 Central to addressing such problems is the production of knowledge in the context of its application, taking into account different forms of understanding, building upon knowledge of local conditions and decision‐making processes, and involving multiple disciplines and a variety of stakeholders.10, 11, 12 This process is essential for creating ‘usable science’ or ‘practice‐orientated research’ that is explicitly designed to inform adaptation decision making and policy, and to identify and support effective adaptation strategies.13, 14, 15, 16 | review | 98.8 |
The development of community‐based adaptation (CBA) approaches is one response to the call for more usable science for adaptation. Emerging from the participatory development field, and supported more broadly by calls for deliberative governance practices in society,17, 18, 19 CBA can be defined as ‘a community‐led process, based on communities’ priorities, needs, knowledge, and capacities, which should empower people to plan for and cope with the impacts of climate change.’20 Research has an important role in this process, where ‘research’ refers to systematic investigation or inquiry aimed at contributing to knowledge on climate change impacts, vulnerability, and adaptation, and which builds upon local, traditional, and scientific knowledge systems. Capacity building, knowledge mobilization, empowerment, and training are also viewed as essential features of research in CBA, with various actors performing research functions in CBA projects, including academics, consultants, nongovernmental organizations (NGOs), governments, and communities themselves. Implicit to CBA is some form of external engagement to assist communities in this process, and may range from projects where communities themselves request support to those that are initiated by outside actors. This reflects the nature of climate change, where despite communities often having significant knowledge on local environmental risks, understanding of projected climate change, and potential vulnerabilities is often limited.21 | other | 96.75 |
Reflecting the breadth of responses that adaptation to climate change can take at a local level, CBA projects take a variety of forms.22, 23, 24, 25 On the one hand, they may initiate discussion on the risks posed by climate change, raise awareness on the need to adapt to future stressors, build general capacity to identify and manage change, and seek to inform decisions undertaken at the individual, household, and community level. On the other hand, CBA projects may be deliberately supported by governments or donors to identify, prioritize, implement, and evaluate adaptations. Local level engagement and emphasis on local empowerment underpin CBA projects and, increasingly, effort is being directed to scaling‐up community work to inform broader level adaptation programing.23, 26 While most CBA projects have been undertaken in low‐to‐middle income nations, there is also emerging interest in employing CBA in high‐income nations, specifically with indigenous populations and resource‐dependent communities.27 | other | 99.56 |
The CBA literature promises much and, as Dodman and Mitlin28 note, its advocates argue that it is a highly effective approach for assisting adaptation and building adaptive capacity at a local level. As CBA has become mainstream, however, some have begun to question the de facto assumption that engaging communities in this manner is always the best or most successful approach for adaptation.6, 22, 28, 29, 30, 31, 32 Such reflections have been primarily articulated in the context of research in low‐to‐middle income nations, and critique the often uncritical way CBA is portrayed within research and practitioner communities, with limited examination of the power relationships that influence the outcomes of local level projects or analysis of the challenges associated with undertaking CBA in cross‐cultural contexts.33, 34, 35 There remains a need for further such reflective attention and to extend this to work taking place to indigenous populations in high‐income nations—what Young36 called the ‘third world in the first’ and others ‘the fourth world’37—to ensure that CBA is undertaken appropriately and productively with, by, and for indigenous peoples and communities. In the Arctic, e.g., community‐based research is being widely promoted by communities, governments, indigenous groups, and funding organizations; yet concerns have been noted over potential for tokenistic engagement of communities, consultation fatigue, and imbalance between Western and indigenous knowledge in this work.13, 15, 38, 39, 40 | review | 99.7 |
In this article, we respond to this identified deficit, critically examining the opportunities, tensions, and challenges that arise within CBA work with Inuit communities in Canada. The article aims to go beyond simply documenting successes and challenges to critically reflect and deliberate on aspects of CBA research from our collective experiences as Western‐trained nonindigenous academics who work within the Canadian Arctic and sub‐Arctic, as well as with indigenous partners globally. Such critical reflection is essential if we are to learn from our experiences, and provides a foundation for future projects that seek to work at the interface of Western and indigenous knowledge in an adaptation context in general and in the Arctic in particular. As such, the work is part of what Preston et al.34 call a reflexive approach to adaptation research; a nascent field of study in the adaptation field that targets ‘the research paradigm itself and the role of the researcher within it.’ We begin by providing context on Canada's Inuit populations and the climate adaptation challenges faced, then describe the multiday workshop methodology that provides the research and reflexive basis for the paper, and end with a critical examination of Inuit‐focused CBA research. | other | 90.56 |
Canada's Inuit population numbers approximately 59,000 people, primarily living in small, remote coastal communities scattered across Canada's northern coastline. Communities range in size from approximately 7000 to as low as 100, with the four Inuit‐administered settlement regions (Nunavut, Nunavik, Nunatsiavut, and the Inuvialuit Settlement Region) covering approximately 31% of the Canadian landmass. Many Inuit communities rely on mixed economies, composed of waged employment and subsistence activities. | other | 99.94 |
Projections indicate that the Arctic will see the most rapid and extreme warming this century, at least double the global average, and this warming is expected to have substantial impacts on sea ice, extreme weather events, and Arctic ecology.41, 42 Already, Northern Canada—referred to also as ‘the North’—is experiencing some of the most dramatic changes in climate globally, with impacts on personal safety, food and water security, mental health and well‐being, and community infrastructure documented.41, 43, 44, 45, 46, 47, 48, 49 Socioeconomic conditions and change increase the sensitivity of Inuit communities to these impacts.42, 48, 50, 51 For example, research has documented high rates of food insecurity; housing overcrowding and poverty are chronic problems; wide‐ranging institutional challenges have been identified as constraints to community planning and health care provision; and access to health‐sustaining resources has been identified as a major challenge.52, 53, 54, 55, 56, 57 These challenges reflect, in part, the ongoing legacies of colonization as Inuit were settled into permanent communities and incorporated into a colonial relationship with the Canadian state in the 1950s and 1960s, and livelihoods and societal interactions transformed over a short period of time.58, 59 | other | 87.9 |
Despite well‐documented vulnerabilities to a changing climate across the North, research has also highlighted the substantial adaptability of Inuit communities.42 Indigenous knowledge and social networks, have been identified as protective factors, moderating sensitivity to climate‐related risks and underpinning adaptive capacity, albeit with concerns in‐light of continuing and often‐rapid socioeconomic and cultural transformations.48, 60, 61, 62, 63, 64, 65 Indeed, Northern societies have not been passive in the face of a rapidly changing climate, and adaptation has been prioritized as an essential component of Northern climate policy since the early 2000s, with the creation of adaptation plans for many Northern communities and a variety of adaptation policies, programmes, and practices evident.66, 67, 68 More broadly, Inuit have secured growing political autonomy, providing new forums to respond to Northern concerns and priorities, and have been vocal in lobbying for climate action on the national and international stage.69 | other | 99.7 |
Significant research on the human dimensions of climate change has been undertaken in Northern Canada, and there is an emerging focus on adaptation policy development across different levels of government.70, 71 The importance of engaging communities throughout all stages of the research process, from setting and defining project priorities, to overseeing research activities, to collecting and analyzing data, to disseminating results, is increasingly being recognized, with the majority of projects claiming to adhere to principles of participatory research.16, 39, 47 | other | 99.9 |
In particular, the last decade has witnessed an increased emphasis on CBA research in Northern Canada, and is increasingly being emphasized by funding agencies, governments, research licensing bodies, and the scientific community. At a broad level, this builds from acknowledgment of the damage that historical research practices have caused in the North, of an understanding of continuing colonial legacies, and of associated mistrust of Western knowledge.72, 73, 74, 75, 76 Specific to adaptation, the importance of community engagement reflects how climate change will affect Northern communities, with many risks propagated through subsistence‐based hunting and land use activities in which individual, household, and community behavior and decision making are essential for adaptation to current and future change.44, 46, 50, 66, 77 Many adaptations, therefore, need to be rooted in local customs, values, and decision‐making process if they are to be successful, building on traditional knowledge of local environmental conditions and coping mechanisms. Local engagement is further underscored by institutional processes in Canada's Inuit regions, in which community consultation, the integration of cultural values, and respect for traditional knowledge are built into political and governmental decision‐making processes as part of land claims agreements and regional and territorial government institutions. In this context, adaptation policy and planning processes have significant emphasis on community engagement.66 | other | 98.3 |
CBA projects have taken a variety of forms in Inuit regions, including projects assessing vulnerability where the aim is to work with communities to illustrate how individual and household behavior, decision making, and social networks can underpin efforts to manage climate change impacts; projects actually developing, implementing, and evaluating adaptations supported by government programs; and initiatives focusing on building skills, fostering social learning for adaptation, and sharing knowledge on current and projected climate change impacts. A diversity of community–researcher partnership has evolved in CBA projects, with some guided by formally negotiated partnership agreements, although the majority of projects proceed based on informal agreements. | other | 99.9 |
To provide the basis for critically examining CBA research with Inuit communities in northern Canada, a 2‐day workshop that brought together academic researchers and emerging scholars was held at McGill University. Participants (n = 23) were selected via their affiliation with a community‐based partnership project that combines Western and indigenous knowledge to inform adaptation policy and programming in the Canadian North, and included faculty members of varying years of experience from six Canadian universities and one Australian university (n = 8), masters and doctoral students (n = 8), graduate research assistants (n = 5), an academic based at a Northern research institution (n = 1), and one researcher in the federal government (n = 1). Students were included due to their often‐considerable fieldwork responsibilities in adaptation projects and their day‐to‐day engagement with communities. Attendees represented a variety of academic disciplines, including geography, epidemiology, population medicine, indigenous studies, engineering, and public health; have substantial experience working in the North and beyond on community‐based research, some for over 20 years and all have been working with Arctic communities for at least 1 year; have studied various risks posed by climate change; and, collectively, have worked with Inuit communities in all four Inuit regions across Canada. As such, the reflections of participants in the workshop are based upon a diversity of personal experiences gained from many projects in many different communities. | other | 99.75 |
A workshop was selected as the most appropriate venue for critical reflection on CBA because it allowed multiple perspectives from diverse academics to be brought to the table and discussed in a collegial setting. In so doing, the work is consistent with other studies in the peer‐reviewed scholarship that have used workshops for knowledge generation and reflection (e.g., Refs 78, 79, 80). The inclusion of only academics reflected our aim to provide a space for researchers to reflect on the challenges faced in mobilizing CBA principles in their own work. The article, therefore, provides only a partial reflection of CBA, capturing the perspectives of university‐affiliated and government‐based nonindigenous scientists. We do not claim to speak for communities about their experiences in research, and recognize the importance of supporting Northern community members’ reflections on, and critiques about, the research process. | other | 99.8 |
Facilitation of the workshop sought to promote a collaborative learning process with emphasis on reflection among participants, and encouraged a balance between structured discussion and exploration of emergent themes. The aim was to challenge and deliberate the role community‐based research can and should play in adaptation. A number of steps were used to this end. First, prior to the workshop, participants were asked to read four key articles22, 39, 72, 81 and were provided with the workshop format, as well as a list of questions to consider in advance. The workshop began with participants describing the projects they were engaged in, before they were divided into break‐out groups, preselected to have a diversity of members of different ages, years of experience, disciplines, and geographic focus of work. Each group was assigned a facilitator, and questions were posed to stimulate participants to share their experiences and to reflect on CBA as a group, with discretion given to each group to allow discussions to evolve according to the interests of those present. The breakout groups then reconvened, with each profiling the main thoughts and ideas they discussed, which were used for a facilitated full group discussion on key themes. | other | 98.7 |
Detailed notes on the workshop were kept by all facilitators, and were synthesized and analyzed to identify key themes. Four meta‐themes were identified around which key arguments made in the workshop were profiled. Building on the emergent themes from the workshop, a literature review was then conducted, focusing on the general CBA literature and scholarship on participatory research approaches in indigenous communities, and was used as a basis for critically examining CBA work with Inuit communities. | other | 71.25 |
It is important to note that CBA has not evolved in a vacuum in Northern Canada but, rather, builds upon work on community‐based participatory research (CBPR), where considerable scholarship on resource management, health, and community development has been conducted with indigenous communities, with substantial focus on how to ethically engage communities and work with indigenous knowledge, epistemologies, and cultural values.82 The focus on intervention, policy development, and planning for future risks—within a context of climate change impacts where uncertainty is high and recognition of change is sometimes contested—differentiates CBA from CBPR, and also brings additional challenges. Indeed, in the workshop, participants expressed unease at how CBA/CBPR terms were being appropriated by the research community (including, at times, by themselves), with many feeling they had become buzzwords that were often used tokenistically to sell projects to funders, with community engagement being viewed as a box to tick as opposed to an ongoing process of dialogue and engagement. Such concerns parallel discussions around the use of the terminology of ‘participation’ and ‘empowerment’ in the international development field or in adaptation studies more generally,34, 83, 84 and many felt that any academic with an adaptation focus was now obligated to frame their scholarship with a participatory research lens to meet these expectations. This raises problems, particularly if projects framed as participatory are not in practice, potentially leading to spurious findings and inappropriate recommendations.34 | other | 99.7 |
It is often taken as a truism that research has a positive role to play in community adaptation, yet there have been very few attempts to investigate many of the claims made.4, 6, 28 There is a long history of interventions in Northern Canada, often advanced by outsiders in the name of ‘beneficial’ outcomes, which only serve to reflect nonindigenous worldviews and notions of progress and planning. These outside interventions have led to critiques about how researchers approach ‘community’ in the context of climate change and other issues.38, 85, 86, 87 In the workshop, this emerged as central theme, with participants reporting concern about how adaptation discourse has the potential to perpetuate legitimization of outside intervention/control, and entrench unequal power relations between Northerners and outside researchers. Many reported a general feeling of unease at being involved in research intervening in communities and cultures of which they are not a part, particularly about appropriating local initiatives as research projects and potentially compromising community leadership and agency. | other | 99.5 |
The effectiveness of research in enhancing adaptive capacity can be problematic given the considerable socioeconomic barriers to adaptation at various scales and over which communities and researchers have limited influence.22, 84 Participants also expressed concern that CBA could establish adaptation as a local issue, and depoliticize structural determinants of adaptive capacity. This led some in the workshop to question the ethics of the adaptation/intervention framing of CBA projects, given the difficulty of achieving positive change in the short term or within the confines of funding cycles, and possibility of ‘over‐promising’ results or outcomes from projects. | other | 99.8 |
The sustainability of projects is also a concern for CBA. A number of workshop participants reported working with communities on research‐funded projects to implement and evaluate local pilot adaptation initiatives. In one example, the pilot program was widely acclaimed by the community and showed demonstrable links to enhancing adaptive capacity. While the aim of the work was to showcase and demonstrate the effectiveness of the initiative as a potential adaptation, upon project completion there was widespread expectation the initiative would continue. Despite repeated attempts, additional funds or a government partner to continue the work could not be found. Without funding to support needed supplies and materials, and community member employment, the project dissolved, resulting in feelings of loss and lack of power among the participants engaged and the communities in which the pilot strategy was implemented, potentially undermining long‐term adaptive capacity. | other | 99.9 |
The preceding example raises questions about the role of research in adaptation in absence of broader level of support and commitment from various levels of government; a context within which much CBA work takes place, even in the North where there is strong emphasis on responding to community needs at various levels of government. CBA faces a dilemma here: research is needed to develop an evidence base on adaptation, yet the very participatory process used to create this evidence base can generate significant expectations for positive change, which, if not followed with visible developments, can reduce local interest in and valuation of research or, worse, become maladaptive (Table 1). Moreover, with research having an increasingly active role in developing and funding interventions, there is the potential for decision makers at various levels of government to download adaptation to the research community, a role researchers neither have the mandate, capacity, or legitimate authority to take on. There has been significant debate in the general literature about the ways in which the local focus of CBA can direct attention away from underlying structural determinants of vulnerability.84, 88, 89 The substantial research focus on developing community adaptation may also foreclose opportunity for local institutions to spearhead this work independently, perpetuating colonial patronage relationships and uneven power dynamics between Northern and academic research partners. | other | 99.8 |
The role of research in community adaptation is thus complex, and some have questioned whether communities would be better off without this type of research. Consensus emerged in the workshop that CBA does have a role, but not in all cases and is contingent upon community experience with past research, the nature of the proposed work, and process of engagement, community interest, and priorities. Deciding when and how to intervene in adaptation processes through research should be carefully considered with an eye toward a number of the benefits and harms that may arise. Such reflection needs to be an explicit goal in the early stages of proposed CBA work. | other | 99.9 |
Specific benefits research can bring within the context of Inuit‐focused CBA projects include: Practical information and benefits: There are a number of practical reasons for researchers being involved in community adaptation, including the ability to facilitate financial and human resources to which communities otherwise would not have access; the focus on issues which would likely be neglected given the present day nonclimate‐related challenges facing Northern settlements; providing support to interpret jargon‐laden scientific reporting about climate change into meaningful information; the ability to advocate for policy needs to broader levels of government; the opportunity to link communities in different regions facing similar challenges with climate change; the ability for researchers to be more neutral and work across kinship boundaries in communities; and the potential to help define and pursue answers to research questions of relevance to community members, especially where incomplete or inaccurate information constrains adaptation. Furthermore, given historical experiences of research in the North, the focus on working with communities in projects in which indigenous knowledge is highly valued can help to legitimize and enhance confidence in such knowledge systems to the science community in general, to policy makers, and in some instances to communities themselves (e.g., Ref 81). Future focus: While environmental change in itself is not new in the North, and while indigenous knowledge and practice have evolved and continue to evolve in this context,90 the magnitude of projected changes in climate and their long‐term directional nature may challenge Inuit conceptualizations and understanding of environmental (in)stability and government planning.91, 92 Research can have an essential role in facilitating consideration of how projected future changes may impact communities and livelihoods, affect government policy and programming, and challenge the rights of Inuit (e.g., as per land claims agreements). Evaluation: The development of an evidence base on the potential effectiveness of community adaptations based on the integration of Western and indigenous knowledge is an important area within which research can contribute. This is particularly important if higher levels of government are to support adaptation programming in the context of other pressing needs. Accountability across scales: CBA prioritizes the community as the entry point for adaptation, yet responses in one location can displace impacts and vulnerabilities to other communities, regions, or to future generations.92, 93 Research has an important role and a responsibility in examining the extent to which community adaptations are optimal across sectors and regions, and within the context of current and projected stressors, and of being mindful of how potential adaptation recommendations or strategies could impact other areas. | review | 98.6 |
Practical information and benefits: There are a number of practical reasons for researchers being involved in community adaptation, including the ability to facilitate financial and human resources to which communities otherwise would not have access; the focus on issues which would likely be neglected given the present day nonclimate‐related challenges facing Northern settlements; providing support to interpret jargon‐laden scientific reporting about climate change into meaningful information; the ability to advocate for policy needs to broader levels of government; the opportunity to link communities in different regions facing similar challenges with climate change; the ability for researchers to be more neutral and work across kinship boundaries in communities; and the potential to help define and pursue answers to research questions of relevance to community members, especially where incomplete or inaccurate information constrains adaptation. Furthermore, given historical experiences of research in the North, the focus on working with communities in projects in which indigenous knowledge is highly valued can help to legitimize and enhance confidence in such knowledge systems to the science community in general, to policy makers, and in some instances to communities themselves (e.g., Ref 81). | other | 99.9 |
Future focus: While environmental change in itself is not new in the North, and while indigenous knowledge and practice have evolved and continue to evolve in this context,90 the magnitude of projected changes in climate and their long‐term directional nature may challenge Inuit conceptualizations and understanding of environmental (in)stability and government planning.91, 92 Research can have an essential role in facilitating consideration of how projected future changes may impact communities and livelihoods, affect government policy and programming, and challenge the rights of Inuit (e.g., as per land claims agreements). | other | 99.9 |
Evaluation: The development of an evidence base on the potential effectiveness of community adaptations based on the integration of Western and indigenous knowledge is an important area within which research can contribute. This is particularly important if higher levels of government are to support adaptation programming in the context of other pressing needs. | other | 99.94 |
Accountability across scales: CBA prioritizes the community as the entry point for adaptation, yet responses in one location can displace impacts and vulnerabilities to other communities, regions, or to future generations.92, 93 Research has an important role and a responsibility in examining the extent to which community adaptations are optimal across sectors and regions, and within the context of current and projected stressors, and of being mindful of how potential adaptation recommendations or strategies could impact other areas. | other | 99.9 |
That CBA can have a positive role in community adaptation is widely acknowledged in the literature and by participants in the workshop, but it is important to note that CBA is not a panacea as sometime presented in the literature, and has limitations and potential negative impacts. Indeed, participants in the workshop believed that the often uncritical belief that CBA approaches are ‘better,’ is reducing space for critical reflection on which approaches and methods are most appropriate for a given context and question. For instance, not all communities want or have the capacity to be involved to the level of engagement implied by CBA approaches, or are they necessarily suitable or desirable for all research questions. Furthermore, participation also engenders challenges: personal views may become more entrenched through participation if not structured properly, participants may become more confused through exposure to different viewpoints and ideas, and local power dynamics (which may go unnoticed or unappreciated by outsiders) may preclude the inclusion of all voices in the process or engagement maybe limited to most politically active and interested community members.31, 35, 94 Arguably, in some cases, more conventional researcher‐led projects may have a more important role to play in adaptation research, especially where communities actually want someone to independently respond to a pressing issue or need; yet in the context of the current literature, this might be deemed ‘inappropriate.’ Similar concerns have been recently articulated in the literature with regards to practice‐orientated approaches to adaptation in general.4, 31, 34 | review | 99.75 |
It is also important to note that researchers should not expect everyone in communities to welcome the proposed work or be interested in engaging, however participatory the process attempts to be. With regards to this latter point, some student participants noted significant anxiety during their fieldwork—despite following guidelines for community engagement—as local interest in being engaged was limited; indeed, the literature, with its overemphasis on success stories and sanitized descriptions of methodology, had not prepared many students for the on‐the‐ground realities of community research. Beyond practical challenges of doing participatory research in the North—time commitment, expense, language differences, and institutional recognition and support (e.g., see Refs 34, 39, 40, 95, 96)—the nature of CBA can also bring tensions to researcher‐community relations, including: Tensions over process: Given the in‐depth nature of community engagement in CBA, there is the potential for community resistance to certain components of research. Workshop participants, e.g., described how communities viewed evaluation of pilot adaptations as intrusive and distracting despite recognition by local leaders and institutions of the importance of such metrics. Accommodating these concerns often involves scaling‐down the depth and frequency of the evaluation process and tools (e.g., fewer interviews, no large community surveys), which may potentially compromise the ability to generate results of sufficient rigor to assist communities in their efforts to obtain funding to continue pilot interventions or to scale up pilot projects into regular programs. There is also a tension between recognizing the importance of considering future risks, while still understanding that there are more pressing day‐to‐day issues that may take precedence. This is further complicated by the fact that, for some Inuit, there is a strong hesitancy to speak about the future due to a belief in the sentience of the natural world, acknowledgment of variation and the transient nature of environmental knowledge, and cultural resistance to focusing on the negative.38 Consequently, few of the adaptation projects that workshop participants were engaged in had a strong future focus, despite this being recognized as a key contribution researchers can bring to community adaptation. A similar observation has been made in the general CBA literature where the factoring of future climate risks into CBA has remained limited, and even discouraged by some for fears that such consideration may lead to overemphasis on future‐orientated technological responses.32, 97, 98 Maintaining a climate change/adaptation focus: Despite the fact that the Arctic is witnessing the most dramatic climate change globally, communities are not always interested in climate change‐focused projects, with more pressing issues often requiring attention.99 Consequently, some workshop participants felt like they were almost pushing adaptation onto communities in their work. There was acknowledgement that maintaining an adaptation focus can be challenging given the participatory nature of CBA projects, in which communities can steer attention to other issues that may be more pressing at the current time (e.g., Ref 100). | review | 99.7 |
Tensions over process: Given the in‐depth nature of community engagement in CBA, there is the potential for community resistance to certain components of research. Workshop participants, e.g., described how communities viewed evaluation of pilot adaptations as intrusive and distracting despite recognition by local leaders and institutions of the importance of such metrics. Accommodating these concerns often involves scaling‐down the depth and frequency of the evaluation process and tools (e.g., fewer interviews, no large community surveys), which may potentially compromise the ability to generate results of sufficient rigor to assist communities in their efforts to obtain funding to continue pilot interventions or to scale up pilot projects into regular programs. There is also a tension between recognizing the importance of considering future risks, while still understanding that there are more pressing day‐to‐day issues that may take precedence. This is further complicated by the fact that, for some Inuit, there is a strong hesitancy to speak about the future due to a belief in the sentience of the natural world, acknowledgment of variation and the transient nature of environmental knowledge, and cultural resistance to focusing on the negative.38 Consequently, few of the adaptation projects that workshop participants were engaged in had a strong future focus, despite this being recognized as a key contribution researchers can bring to community adaptation. A similar observation has been made in the general CBA literature where the factoring of future climate risks into CBA has remained limited, and even discouraged by some for fears that such consideration may lead to overemphasis on future‐orientated technological responses.32, 97, 98 | other | 88.4 |
Maintaining a climate change/adaptation focus: Despite the fact that the Arctic is witnessing the most dramatic climate change globally, communities are not always interested in climate change‐focused projects, with more pressing issues often requiring attention.99 Consequently, some workshop participants felt like they were almost pushing adaptation onto communities in their work. There was acknowledgement that maintaining an adaptation focus can be challenging given the participatory nature of CBA projects, in which communities can steer attention to other issues that may be more pressing at the current time (e.g., Ref 100). | other | 99.94 |
The tensions of having adaptation as the entry point for projects raise questions over whether climate change is actually a contrived framing. Indeed, there is an absence of discussion in the literature on how an adaptation framing is developed and maintained in projects—where it is typically assumed that communities are interested and are willing to play a major role in leading adaptation projects. Many workshop participants, based on their own experiences, doubted this was always the case, believing the lack of critical discussion to reflect the common assumption that community‐initiated and ‐led projects are ‘better,’ and without which good participatory research cannot occur. Locally initiated and led projects are certainly an important dimension of CBA, but close and effective participation may also occur where researchers themselves initiate an adaptation project, providing engagement is done in a collaborative and ethically sound manner. Particularly for creeping and slow‐onset hazards like climate change, where there are weak incentives for institutions and individuals to mobilize given the uncertain long‐term nature of the problem, some outside initiation is often essential.5, 32, 101, 102 Conflicting results: CBA often involves knowledge being created at the interface of Western and local/indigenous knowledge within a specific cultural context.103 There is significant potential for both knowledge systems to be complementary when understanding the nature of the risks posed by climate change or identifying adaptation strategies (e.g., see Refs 104, 105, 106). In some areas, however, there remains divergent and polarized opinions on current and projected impacts of climate change.107, 108, 109 In these cases, the need to adapt is contested, and preferred short‐term policy responses may compromise long‐term sustainability. The role of research in such situations is complex.32, 103 Building upon and integrating indigenous and Western knowledge underpin CBA, but researchers, communities, and decision makers may have different perspectives on risks, particularly once climate projections are integrated, reflecting different value systems about the future. In such circumstances, communities may not want to hear results that could imply the need for significant changes in livelihood activities, or may request the results be kept confidential; equally, researchers may dispute findings if they are not corroborated by other research. Such circumstances are not unique to the North; Few et al.110, 111 document similar challenges in the context of coastal management in the UK where communities often want to ‘wait and see’ as opposed to getting involved in anticipatory adaptation action. These challenges require careful and skilled negotiation, especially given the policy implications of research, and in an Arctic context, the uncertainty about future wildlife trends. Indeed, communities often highlight the inaccuracy of past scientific stock assessments, which underpin the mistrust many Inuit feel for conventional scientific research.112, 113, 114 | review | 99.56 |
Conflicting results: CBA often involves knowledge being created at the interface of Western and local/indigenous knowledge within a specific cultural context.103 There is significant potential for both knowledge systems to be complementary when understanding the nature of the risks posed by climate change or identifying adaptation strategies (e.g., see Refs 104, 105, 106). In some areas, however, there remains divergent and polarized opinions on current and projected impacts of climate change.107, 108, 109 In these cases, the need to adapt is contested, and preferred short‐term policy responses may compromise long‐term sustainability. The role of research in such situations is complex.32, 103 Building upon and integrating indigenous and Western knowledge underpin CBA, but researchers, communities, and decision makers may have different perspectives on risks, particularly once climate projections are integrated, reflecting different value systems about the future. In such circumstances, communities may not want to hear results that could imply the need for significant changes in livelihood activities, or may request the results be kept confidential; equally, researchers may dispute findings if they are not corroborated by other research. Such circumstances are not unique to the North; Few et al.110, 111 document similar challenges in the context of coastal management in the UK where communities often want to ‘wait and see’ as opposed to getting involved in anticipatory adaptation action. These challenges require careful and skilled negotiation, especially given the policy implications of research, and in an Arctic context, the uncertainty about future wildlife trends. Indeed, communities often highlight the inaccuracy of past scientific stock assessments, which underpin the mistrust many Inuit feel for conventional scientific research.112, 113, 114 | review | 97.75 |
One implication concerning tension over results is that CBA projects may avoid the more contentious issues or try to minimize ‘rocking the boat.’ The potential for such tension should not, however, distract from the benefits of CBA; rather, the example of wildlife management further emphasizes the importance of the process of CBA involving continual dialogue and transparency between researchers and communities, beginning at project inception, so that all parties are aware of the direction the work may take and offer their free, prior, and informed consent; ongoing during analysis of results as they emerge to limit the likelihood of surprise; and continuing during communication of findings with different stakeholders. Researchers also need to be aware of the potential for conflict from the beginning of CBA projects, and be careful not to overprivilege one source of knowledge or evidence if conflict does arise. In this way, CBA processes may help to create balance across different ways of knowing, helping to ensure that Western approaches do not repeat past mistakes where research undermined traditional knowledge and community perspectives.38, 85 Managing expectations: the focus of CBA on building adaptive capacity and developing interventions can result in high expectations within partnering communities that projects will directly influence policy and programming. Yet, not all CBA projects have discernible outcomes, especially in the short term, and even where they do, may have difficulty in sustaining them or face significant barriers impeding success. Failure to manage expectations and the overselling of potential benefits by researchers can result in conflict with local partners if there is a mismatch in expectations. Indeed, funding agencies increasingly want to see decision‐making and action‐oriented outcomes as explicit objectives in project proposals, often supported by letters of support from communities, pushing researchers to sometimes list outcomes which may or may not happen and to which partners may or may not be committed. Managing research promises and funding agency demands is important for creating realistic expectations of CBA projects. The multifaceted role of the researcher: Researchers (be they students, faculty, consultants, community members, or government‐ or NGO‐based) play various roles in CBA projects, including as educators, communicators, community workers, promoters, facilitators, and negotiators. These roles reflect the nature of CBA work, where researchers are continuously asked and challenged by community partners to go beyond the standard academic practice of only generating new knowledge. Such roles attract many to CBA research; yet such demands and responsibilities can also compromise the integrity and quality of the research component of projects. For example, a number of workshop participants reported being frequently requested to provide educational resources and training outside of the research parameters, requested to search out funds for other projects, and asked to advise on other topics. While providing this level of support was deemed rewarding and critical for establishing trust, the time commitments required can have implications for the quality and impact of the actual research. It is important, therefore, for researchers to be open about these challenges, and negotiate relationships with community partners in a transparent manner, starting at the onset of a project. | review | 86.7 |
Managing expectations: the focus of CBA on building adaptive capacity and developing interventions can result in high expectations within partnering communities that projects will directly influence policy and programming. Yet, not all CBA projects have discernible outcomes, especially in the short term, and even where they do, may have difficulty in sustaining them or face significant barriers impeding success. Failure to manage expectations and the overselling of potential benefits by researchers can result in conflict with local partners if there is a mismatch in expectations. Indeed, funding agencies increasingly want to see decision‐making and action‐oriented outcomes as explicit objectives in project proposals, often supported by letters of support from communities, pushing researchers to sometimes list outcomes which may or may not happen and to which partners may or may not be committed. Managing research promises and funding agency demands is important for creating realistic expectations of CBA projects. | other | 99.9 |
The multifaceted role of the researcher: Researchers (be they students, faculty, consultants, community members, or government‐ or NGO‐based) play various roles in CBA projects, including as educators, communicators, community workers, promoters, facilitators, and negotiators. These roles reflect the nature of CBA work, where researchers are continuously asked and challenged by community partners to go beyond the standard academic practice of only generating new knowledge. Such roles attract many to CBA research; yet such demands and responsibilities can also compromise the integrity and quality of the research component of projects. For example, a number of workshop participants reported being frequently requested to provide educational resources and training outside of the research parameters, requested to search out funds for other projects, and asked to advise on other topics. While providing this level of support was deemed rewarding and critical for establishing trust, the time commitments required can have implications for the quality and impact of the actual research. It is important, therefore, for researchers to be open about these challenges, and negotiate relationships with community partners in a transparent manner, starting at the onset of a project. | other | 99.9 |
In pursuing CBA approaches, researchers need to scrutinize carefully the context in which they are working, and be cognizant of the challenges and benefits CBA brings. There is no ‘one size fits all’ guideline of how to do CBA effectively, but there are a number of responsibilities for those engaged in CBA work: Researchers should not assume that research has a positive role to play in community adaptation just because it utilizes participatory approaches. CBA can assist communities, build capacity, develop locally appropriate adaptations based on indigenous and Western knowledge, expand the salience of planning for future risks, and direct attention to locally important issues. Yet, participation in and of itself does not necessarily denote good or ethically sound CBA. In fact, participation in CBA research can perpetuate the privilege of Western knowledge over local values and indigenous knowledge, and can further marginalize communities if power relations are not addressed (also see Refs 28, 33, 84). CBA also does not prevent maladaptation (see Table 1), and in conducting research that facilitates or legitimizes intervention, researchers must address the potential that their work can do harm, especially when constrained by a lack information to make robust decisions in light of dynamic climate/ecological conditions. These potential dangers require careful consideration before projects proceed. Researchers need to manage expectations and be realistic about what CBA can achieve. While contending with the possibility that CBA can effect harmful change, we also must address the risk of ineffectuality. There are multiple barriers to adaptation that limit what can be achieved locally, and many of the purported benefits of CBA—e.g., capacity building and empowerment—may appear tokenistic to communities facing many pressing issues. Given the history of research in the North, deficits between what projects promise and what transpires can further erode trust in research. Being transparent with communities about expectations is thus essential for CBA work, and needs to begin with researchers and partners recognizing that CBA is not a ‘silver bullet,’ with work unlikely to overcome many of barriers to adaptation in the short term. Framing and communicating research‐funded/‐driven community adaptation initiatives as ‘pilot projects’ is one way to help moderate expectations; highlighting the importance of projects as first steps for increasing the political salience of adaptation and communicating local needs to higher levels is also important. Careful selection of methods, such as incorporating process‐based evaluation techniques in addition to outcomes‐oriented evaluation, may also help make legible the short‐term results or progress of CBA programs. Researchers should premise their work on an understanding that in CBA, how knowledge is generated is as important as the research outcomes. Researchers need to be cognizant of key principles of CBA, including codeveloping projects with communities who are engaged as partners, utilizing locally appropriate and approved theories and methodologies that respect the history, culture, values, and wishes of a community, while recognizing that each community is different in terms of their expectations and needs. Researchers working in indigenous communities also need to understand the colonial history and culture in which they work, and consider the underlying power dynamics shaping collaborations. Personal relationships and reciprocity underpin these principles,72, 82, 115 yet projects may fail or encounter substantial challenges even if these principles are adhered to; this is the very nature of CBA. Such challenges and failures should not be sanitized when work is presented but fully reported on. Accurately describing methodological processes and actions undertaken to secure community acceptance and support is essential for broader learning by the CBA community. Moreover, although ethical social science research always requires community consent, researchers should not necessarily be dissuaded from topics that do not imply or require a high degree of participation, or from initiating research ideas that may be of merit but fall outside immediate community priorities (such as maintaining a climate change focus, including future orientation). Researchers must be flexible and open to change, acknowledging that community needs and perspectives may evolve as the project advances. Flexibility implies the need for constant reflective attention, a consideration noted in decolonizing methodologies in general.116, 117 For example, theories and methods guiding projects considered participatory by researchers, may be viewed quite differently by communities as the work evolves, and may reinforce existing power differentials. Flexibility needs to also be balanced, however, within the context of the adaptation focus of CBA projects and skills of the researchers involved. Depending on the project and community interest, this may involve linking adaptation to more immediate socioeconomic concerns that also act as determinants of vulnerability to climate change (e.g., Ref 50), or more explicitly trying to bring in an adaptation lens. Relationships and reciprocity are essential for building the trust in community‐based projects necessary for successful engagement. The importance of developing long‐term relationships is essential for CBA, along with the need for regular interaction with communities and emphasis on the sharing and discussion of results. For students engaged in relatively short‐term projects, the ability to contribute to existing or ongoing projects through larger team‐based and collaborative projects is important for maintaining long‐term commitments, and to avoid short‐term ‘parachuting in’ of researchers. Relationship building does not necessarily require researchers to spend extended time in communities, although depending on the situation it can be helpful, and needs to be assessed on a case‐by‐case basis. Because a key component of CBA involves communities leading and partaking in the research process, continuous research presence could undermine this. The ability of researchers to ‘let go’ of successful projects and give space for communities to establish ownership over them is also important. Researchers should work to better coordinate and plan CBA research in advance to avoid duplication and build on existing work. There are often divergent perspectives between and among researchers and communities about the aims, objectives, and outcomes of CBA. Promoting transparency and accountability, supporting communities to help identify and characterize the potential benefits and tensions the work may bring, and flexibility and openness in design and approach are essential for projects to evolve positively and productively. The use of memorandums of understanding (MOUs) or partnership agreements have been advocated by some indigenous organizations and researchers in this context to minimize the potential for future conflict by formalizing expectations, decision‐making processes, and responsibilities among partners.87, 118 Equally, some communities view such formalized agreements as unnecessary or find formalization of arrangements inconsistent with local values for relational and reciprocal ethics. CBA research requires advance planning and better coordination. Another significant challenge faced by CBA researchers is that of effective coordination before and during projects, with communities often indicating that they are not ‘research‐fatigued’ but ‘researcher fatigued,’ pointing to a lack of coherence among research projects in the same location. As CBA research involves significant community engagement, duplication of the data collection and engagement processes across multiple projects can cause loss of interest and weariness among community members; equally, extensive engagement in developing projects that do not get funded can result in significant frustration and limit interest in future projects, especially given other pressing needs in communities. Addressing this requires specific communication and planning between researchers engaged in CBA‐work in the North. Researchers should actively seek‐out those working in communities they plan to also work in, noting the importance of on online databases of research activity that facilitate understanding of who is doing what (e.g., through websites such as that maintained by Nunavut Climate Change Centre), along with targeted literature reviews and gap analyses.119 | review | 99.56 |
Researchers should not assume that research has a positive role to play in community adaptation just because it utilizes participatory approaches. CBA can assist communities, build capacity, develop locally appropriate adaptations based on indigenous and Western knowledge, expand the salience of planning for future risks, and direct attention to locally important issues. Yet, participation in and of itself does not necessarily denote good or ethically sound CBA. In fact, participation in CBA research can perpetuate the privilege of Western knowledge over local values and indigenous knowledge, and can further marginalize communities if power relations are not addressed (also see Refs 28, 33, 84). CBA also does not prevent maladaptation (see Table 1), and in conducting research that facilitates or legitimizes intervention, researchers must address the potential that their work can do harm, especially when constrained by a lack information to make robust decisions in light of dynamic climate/ecological conditions. These potential dangers require careful consideration before projects proceed. | other | 99.9 |
Researchers need to manage expectations and be realistic about what CBA can achieve. While contending with the possibility that CBA can effect harmful change, we also must address the risk of ineffectuality. There are multiple barriers to adaptation that limit what can be achieved locally, and many of the purported benefits of CBA—e.g., capacity building and empowerment—may appear tokenistic to communities facing many pressing issues. Given the history of research in the North, deficits between what projects promise and what transpires can further erode trust in research. Being transparent with communities about expectations is thus essential for CBA work, and needs to begin with researchers and partners recognizing that CBA is not a ‘silver bullet,’ with work unlikely to overcome many of barriers to adaptation in the short term. Framing and communicating research‐funded/‐driven community adaptation initiatives as ‘pilot projects’ is one way to help moderate expectations; highlighting the importance of projects as first steps for increasing the political salience of adaptation and communicating local needs to higher levels is also important. Careful selection of methods, such as incorporating process‐based evaluation techniques in addition to outcomes‐oriented evaluation, may also help make legible the short‐term results or progress of CBA programs. | other | 99.9 |
Researchers should premise their work on an understanding that in CBA, how knowledge is generated is as important as the research outcomes. Researchers need to be cognizant of key principles of CBA, including codeveloping projects with communities who are engaged as partners, utilizing locally appropriate and approved theories and methodologies that respect the history, culture, values, and wishes of a community, while recognizing that each community is different in terms of their expectations and needs. Researchers working in indigenous communities also need to understand the colonial history and culture in which they work, and consider the underlying power dynamics shaping collaborations. Personal relationships and reciprocity underpin these principles,72, 82, 115 yet projects may fail or encounter substantial challenges even if these principles are adhered to; this is the very nature of CBA. Such challenges and failures should not be sanitized when work is presented but fully reported on. Accurately describing methodological processes and actions undertaken to secure community acceptance and support is essential for broader learning by the CBA community. Moreover, although ethical social science research always requires community consent, researchers should not necessarily be dissuaded from topics that do not imply or require a high degree of participation, or from initiating research ideas that may be of merit but fall outside immediate community priorities (such as maintaining a climate change focus, including future orientation). | other | 99.8 |
Researchers must be flexible and open to change, acknowledging that community needs and perspectives may evolve as the project advances. Flexibility implies the need for constant reflective attention, a consideration noted in decolonizing methodologies in general.116, 117 For example, theories and methods guiding projects considered participatory by researchers, may be viewed quite differently by communities as the work evolves, and may reinforce existing power differentials. Flexibility needs to also be balanced, however, within the context of the adaptation focus of CBA projects and skills of the researchers involved. Depending on the project and community interest, this may involve linking adaptation to more immediate socioeconomic concerns that also act as determinants of vulnerability to climate change (e.g., Ref 50), or more explicitly trying to bring in an adaptation lens. | other | 99.9 |
Relationships and reciprocity are essential for building the trust in community‐based projects necessary for successful engagement. The importance of developing long‐term relationships is essential for CBA, along with the need for regular interaction with communities and emphasis on the sharing and discussion of results. For students engaged in relatively short‐term projects, the ability to contribute to existing or ongoing projects through larger team‐based and collaborative projects is important for maintaining long‐term commitments, and to avoid short‐term ‘parachuting in’ of researchers. Relationship building does not necessarily require researchers to spend extended time in communities, although depending on the situation it can be helpful, and needs to be assessed on a case‐by‐case basis. Because a key component of CBA involves communities leading and partaking in the research process, continuous research presence could undermine this. The ability of researchers to ‘let go’ of successful projects and give space for communities to establish ownership over them is also important. | other | 99.9 |
Researchers should work to better coordinate and plan CBA research in advance to avoid duplication and build on existing work. There are often divergent perspectives between and among researchers and communities about the aims, objectives, and outcomes of CBA. Promoting transparency and accountability, supporting communities to help identify and characterize the potential benefits and tensions the work may bring, and flexibility and openness in design and approach are essential for projects to evolve positively and productively. The use of memorandums of understanding (MOUs) or partnership agreements have been advocated by some indigenous organizations and researchers in this context to minimize the potential for future conflict by formalizing expectations, decision‐making processes, and responsibilities among partners.87, 118 Equally, some communities view such formalized agreements as unnecessary or find formalization of arrangements inconsistent with local values for relational and reciprocal ethics. | other | 99.9 |
CBA research requires advance planning and better coordination. Another significant challenge faced by CBA researchers is that of effective coordination before and during projects, with communities often indicating that they are not ‘research‐fatigued’ but ‘researcher fatigued,’ pointing to a lack of coherence among research projects in the same location. As CBA research involves significant community engagement, duplication of the data collection and engagement processes across multiple projects can cause loss of interest and weariness among community members; equally, extensive engagement in developing projects that do not get funded can result in significant frustration and limit interest in future projects, especially given other pressing needs in communities. Addressing this requires specific communication and planning between researchers engaged in CBA‐work in the North. Researchers should actively seek‐out those working in communities they plan to also work in, noting the importance of on online databases of research activity that facilitate understanding of who is doing what (e.g., through websites such as that maintained by Nunavut Climate Change Centre), along with targeted literature reviews and gap analyses.119 | other | 99.9 |
In meeting these responsibilities, personal skills have an important role. Key traits necessary for work of this nature include deep listening, patience, openness to multiple ways of knowing, willingness to accept and respond to criticism, flexibility, self‐reflection, an ability to communicate and facilitate, a willingness to learn, a desire to develop and maintain strong and lasting relationships, and a sense of humor. These are not skills typically associated with an academic training or undergraduate/graduate university education. To manage these challenges in CBA projects, it is important that students are screened for suitability, are brought along for preliminary field visits to explore their capacity for fieldwork, are provided with sufficient pretraining in CBA and decolonizing research approaches, and are exposed to the challenges that may arise when conducting CBA research—all of which were identified by participants as essential to successful student training and development. | other | 99.9 |
Similarly, for senior‐level CBA researchers, CBA projects demand a level of engagement, openness, shared decision making, uncertainty, and interdisciplinarity not typically associated with research in academia, with a variety of barriers to working on such projects well documented (e.g., recognition in tenure and promotion, time, incentives, etc.), see Refs 34, 72, 120. It has been argued that addressing such challenges requires a transformation in how scientific and academic institutions operate and students are trained, with increased emphasis on interdisciplinary and capacity building for coproducing knowledge with multiple users.11, 121, 122 | other | 99.9 |
The last decade has witnessed the rapid emergence of CBA as a key component of adaptation research and practice, including in the Arctic. The growth in the importance of CBA in northern regions, however, has not been matched with critical reflections on what it means to do CBA, beyond statements on the importance of ‘engaging’ communities. To this end, this article covers novel ground, bringing together multidisciplinary academic researchers and emerging scholars to identify, examine, and reflect on the opportunities, tensions, and challenges of doing CBA with Inuit communities. We argue that although CBA is a powerful approach for supporting communities to adapt to climate change, researchers need to be aware of the challenges of such work and the potential maladaptive implications that may result. Indeed, we caution against the uncritical rush to adopt CBA approaches evident in much Arctic‐focused climate change research. | review | 99.75 |
We also note the limitations of the article, emphasizing that the study only captures the perspectives of largely southern‐based, nonindigenous academic researchers. The issues profiled here are thus not definitive and are by no means exhaustive, but nevertheless represent the beginning of a larger conversation on CBA—one which needs to involve communities, local and regional governments, indigenous organizations, researchers, funders, and decision makers—deciding if, when, where, and how CBA has a role in emerging adaptation research. Indeed, this article can be viewed as part of the CBA process itself, involving colearning and continuous critical reflection to improve how we engage and interact with indigenous communities, knowledge systems, and cultural norms, epistemologies, and ontologies. The importance of such reflection is increasingly being recognized in an environmental change context in general and for adaptation in particular, and is essential for underpinning effective and ethical research. | other | 93.5 |
The human gut microbiota, the consortium of microbial inhabitants in our distal gut, has been increasingly recognized as playing a major role in the maintenance, promotion and distortion of health. A healthy gut microbiota is involved in energy extraction from dietary components , regulation of components of the immune system , vitamin synthesis , and colonization resistance, i.e., protection against colonization by gastrointestinal pathogens . In addition, there is an increasing number of associations between a microbiome imbalance and various diseases and medical conditions . Such disturbances of the healthy microbiome composition have been found associated with infections with gastrointestinal pathogens such as Campylobacter, Salmonella and Vibrio cholerae to more elusive imbalances found in the setting of inflammatory bowel diseases , metabolic syndrome , and irritable bowel syndrome . | review | 99.9 |
Rapid and accurate identification of pathogens is critical to provide the appropriate treatment for patients suffering from certain gastrointestinal conditions. This has in particular been the case for acute diarrheal illness, for which identification of the causative agents still greatly relies on conventional microbiology techniques such as culturing of stool samples . However, although culture-based methods are rapid, sensitive, and specific, they are often designed around a presence/absence criterion, i.e., to detect microbial organisms that are usually absent in health and present in disease. Traditional clinical microbiology methods are less able to detect potential gut microbiota imbalances, i.e. aberrant ratios of multiple non-pathogenic, health-associated microorganisms in the setting of chronic conditions. One of the main reasons is that most intestinal commensals are hard to culture and can only be recovered under specialized technical conditions . Recent advancements in amplification and next-generation sequencing (NGS) techniques, in particular applied to the bacterial and archaeal ribosomal RNA encoding genes (16S rRNA genes) have overcome this problem, are increasingly used in the clinical microbiology lab , and have enormously expanded our knowledge of microbiome composition . | review | 99.9 |
However, it is still difficult to use the composition of the human gut microbiota as a clinical tool in the diagnosis of chronic health conditions. This is partly caused by large inter-individual variations associated with human geographic, dietary, genetic and lifestyle differences, which made it challenging to define the healthy human microbiome . Therefore, most studies comparing microbiomes from healthy controls and diseased patients might be too small to detect small, but real, differences in gut microbiotas. | review | 99.75 |
In this study, we present an NGS-based clinical gut microbiome sequencing assay to assess the relative abundance of health condition-associated microorganisms (Fig 1). The assay utilizes 16S rRNA gene sequencing to identify 28 clinically relevant microbial targets (14 species and 14 genera), including 5 intestinal pathogens, 3 beneficial bacteria, and 20 commonly present inhabitants of the human gastrointestinal tract, with high precision and sensitivity. In addition, we define the relative abundance ranges of these taxa in stool samples from a large healthy human cohort. | study | 99.94 |
A traditional fecal microbiology test requires collecting a rather large stool sample in a cumbersome process and immediately delivery to the laboratory or clinical practitioner. Specific organisms are cultured from the sample based on the physician’s requests, and processing requires interpretation by extensively trained laboratory personnel. This approach usually focuses on the discovery of culturable pathogens. In contrast, 16S rRNA gene sequencing requires only a fraction of the biological material needed for culture-based techniques (just a swab from toilet paper). In addition, the sample is collected in tube with a buffer that lyses microorganisms and stabilizes DNA, allowing the sample to be mailed at room temperature. Thus, sample collection and delivery are greatly simplified. Sequencing and interpretation can be automated to reduce human labor and error. Finally, this method can detect uncultivable organisms and relative abundances of both pathogenic and commensal organisms. | review | 52.16 |
A group of 1,000 self-reported healthy individuals who had submitted fecal samples (one sample per subject) were selected from the ongoing uBiome citizen science microbiome research study (manuscript in preparation). Of these, 103 extracted fecal samples (see below for more details) did not pass our 10,000 read quality control threshold. We used this stringent threshold to ensure detection of all targeted taxa, even at low abundance. The final cohort therefore included 897 individuals (62% male and 38% female). Participants were explicitly asked about 42 different medical conditions such as cancer, infections, obesity, chronic health issues, and mental health disorders. Selected participants with an average age of 39.7 years (SD = 15.5) responded to an extensive survey and self-reported to be currently and overall in good health. None of the individuals selected for the healthy cohort had ever been diagnosed with high blood sugar, diabetes, gut-related symptoms, or any other medical condition. This study was performed under a Human Subjects Protocol provided by an IRB (E&I Review Services, IRB Study #13044, 05/10/2013). Informed consent was obtained from all participants. Analysis of participant data was performed in aggregate and anonymously. | study | 100.0 |
Fecal samples were self-collected by participants at home using commercially available uBiome microbiome sampling kits, which have been designed to follow the specifications laid out by the NIH Human Microbiome Project . Participants were instructed to use a sterile swab to transfer a small amount of fecal material into a vial containing a lysis and stabilization buffer that preserves the DNA for transport at ambient temperatures. Samples were lysed using bead-beating, and DNA was extracted in a class 1000 clean room by a guanidine thiocyanate silica column-based purification method using a liquid-handling robot [22, 23]. PCR amplification of the 16S rRNA genes was performed with primers containing universal primers amplifying the V4 variable region (515F: GTGCCAGCMGCCGCGGTAA and 806R: GGACTACHVGGGTWTCTAAT) . In addition, the primers contained Illumina tags and barcodes. Samples were barcoded with a unique combination of forward and reverse indexes allowing for simultaneous processing of multiple samples. PCR products were pooled, column-purified, and size-selected through microfluidic DNA fractionation . Consolidated libraries were quantified by quantitative real-time PCR using the Kapa Bio-Rad iCycler qPCR kit on a BioRad MyiQ before loading into the sequencer. Sequencing was performed in a pair-end modality on the Illumina NextSeq 500 platform rendering 2 x 150 bp pair-end sequences. | study | 100.0 |
After sequencing, demultiplexing of samples was performed using Illumina's BCL2FASTQ algorithm. Reads were filtered using an average Q-score > 30. Forward and reverse reads were appended together after removal of primers and any leading bases, and clustered using version 2.1.5 of the Swarm algorithm using a distance of 1 nucleotide and the “fastidious” and “usearch-abundance” flags. The most abundant sequence per cluster was considered the real biological sequence and was assigned the count of all reads in the cluster. The remainder of the reads in a cluster were considered to contain errors as a product of sequencing. The representative reads from all clusters were subjected to chimera removal using the VSEARCH algorithm . Reads passing all above filters (filtered reads) were aligned using 100% identity over 100% of the length against a hand-curated database of target 16S rRNA gene sequences and taxonomic annotations derived from version 123 of the SILVA database . The hand-curated databases for each taxa were created by selectively removing sequences with amplicons that were ambiguously annotated to more than one taxonomic group, while still maximizing the performance metrics sensitivity, specificity, precision, and negative predictive value of identification for the remaining amplicons in each taxa (S1 Doc). In total 28 taxonomic groups of clinical relevance passed our criteria of over 90% for each performance metric (S1 Table). Raw FASTQ reads mapping to the samples and the taxa in the reference databases used in this study were uploaded to EBI’s ENA under accession code PRJEB20022. The relative abundance of each taxa was determined by dividing the count linked to that taxa by the total number of filtered reads. | study | 100.0 |
Verification samples were obtained from Luminex‘s xTAG Gastrointestinal Pathogen Panel (xTAG GPP). Verification samples contained real or synthetic stool samples with live or recombinant material, with some specimens being positive for more than one clinical target. A total of 40 positive control samples were used, 35 of which were certified to be positive for one control taxon from our target list, with the exception of those samples containing either Clostridium difficile or Salmonella enterica which are positive for 2 taxa simultaneously (the species to which they belong and their corresponding genus). The control samples were considered negative for the remainder of the taxa on our test panel. Two out of 35 control samples did not pass our sequencing quality thresholds of having at least 10,000 pair-end reads each, so they were removed from further analysis. Five additional Luminex samples positive for Yersinia, a genus that is not present in the final target list, were included as negative controls. Verification samples were processed in uBiome microbiome sampling kits using the clinical pipeline described above. | study | 100.0 |
To derive a preliminary target list of bacteria and archaea to include in our assay, we first identified clinically relevant microorganisms present in the human microbiome. We performed an extensive review of the literature and clinical landscape, and obtained evidence supporting the importance of hundreds of microorganisms known to inhabit the human gut. We included these in our initial list, along with organisms that are commonly interrogated in clinical tests. This initial list was further evaluated for positive and negative associations with several indications, including flatulence, bloating, diarrhea, gastroenteritis, indigestion, abdominal pain, constipation, infection, inflammatory bowel syndrome, ulcerative colitis, and Crohn's disease-related conditions. Ultimately, we compiled a preliminary target list containing 15 genera and 31 species of microorganisms associated with human health status (S1 Table), including pathogenic, commensal, and probiotic bacteria and archaea. | review | 98.25 |
The bioinformatics annotation pipeline developed for this method was specifically designed to have high prediction performance. To this end, we implemented a taxonomy annotation based on sequence searches of 100% identity over the entire length of the 16S rRNA gene V4 region from the preliminary targets in our database (S1 Doc). Curated databases were generated for each of the taxa in our preliminary target list using the performance metrics sensitivity, specificity, precision, and negative predictive value as optimizing parameters. In other words, the bioinformatics pipeline was optimized to ensure that a positive result truly means the target is present in the sample and a negative result is only obtained when no target is present in the sample. After optimizing the confusion matrices for all preliminary targets, 28 out of 46 targets passed our stringent threshold of 90% for each of the parameters (Fig 2). The resulting target list is composed of 5 known pathogens, 3 beneficial bacteria, and 20 additional microorganisms related to various gut afflictions (S2 Table), including commensal bacteria and one archaeon. On average the sensitivity, specificity, precision, and negative prediction value of the microorganisms on our target list are 99.0%, 100%, 98.9%, and 100%, for the species, and 97.4%, 100%, 98.5%, and 100% for the genera. | study | 100.0 |
The 46 preliminary targets identified from literature and available clinical tests are comprised of 15 genera and 31 species. To optimize the bioinformatics pipeline for accurate detection of the maximum number of targets, the following performance metrics were evaluated based on the number of true positives (TP), true negatives (TN), false positives (FP), and false negatives (FN) detected in a manually curated amplicon database (described in S1 Doc): specificity = TN / (TN + FP); sensitivity = TP / (TP + FN); precision = TP / (TP + FP); and negative predictive value (NPV) = TN / (TN + FN). After optimization, 28/46 preliminary targets passed our stringent threshold of 90% (red vertical line) for each of the parameters, resulting in the accurate detection of all genera (light blue) except for Pseudoflavonifractor, and 14/31 species (dark blue). | study | 100.0 |
Many clinically relevant microorganisms associated with health and disease are present at some level in the gut of healthy individuals. The clinical significance of microbiome test results is determined not only by the identity, but also the quantity of distinct species and genera within the context of a healthy reference range. To determine the healthy reference range for the 28 targets, we established a cohort of 897 samples from self-reported healthy individuals from the uBiome microbiome research study (manuscript in preparation). Microbiome data from this cohort were analyzed to determine the empirical reference ranges for the 14 species and 14 genera. For each of the 897 samples, we determined the relative abundance of each target within the microbial population. This analysis gave rise to a distribution of relative abundance for each target in the cohort (Fig 3, S3 Table). These data were used to define a central 99% healthy range with confidence intervals for each target. Many of the targets show significant spread, emphasizing the importance of microbiome identification in the context of a reference range. For example, the pathogen C. difficile is found in ~2% of the healthy cohort, and thus we define a healthy range for it from 0% to 0.18% relative abundance. Although C. difficile is an opportunistic pathogen that can cause severe diarrhea, especially among antibiotic-treated hospitalized patients , our results confirm that asymptomatic C. difficile colonization is not uncommon in healthy individuals . Although all taxa were present in at least one of the healthy individuals, the upper limit of the reference range of the relative abundance was found to be quite high for some taxa (e.g., 63% for Prevotella and 49% for Bifidobacterium). Two species are not represented at all within the central 99% of the healthy cohort: Vibrio cholerae and Ruminococcus albus. The absence of V. cholerae is suggestive of its pathogenic nature and its relatively rare occurrence in the developed world. However, R. albus, has previously been found to be enriched in healthy subjects in comparison to patients with Crohn’s disease . | study | 99.94 |
Healthy participant stool microbiome data were analyzed to determine the empirical reference ranges for each target. The boxplot displays the relative abundance for each of 897 self-reported healthy individuals, revealing the healthy ranges of abundance for the taxa in the test panel. The healthy distribution is used to define the 99% confidence interval (red line). Boxes indicate the 25th–75th percentile, and the median coverage is indicated by a horizontal line in each box. Even in this healthy cohort, many of the bacteria that are associated with poor health conditions are present at some level. As most taxa are absent in a significant number of individuals most boxes expand to 0%, the healthy lower limit (not shown). | study | 100.0 |
After establishing our ability to detect all 28 targets using synthetic DNA at relative abundances of 0.03% or more (S2 Doc, S4 Table), we tested 40 reference isolates from Luminex’s xTAG Gastrointestinal Pathogen Panel to establish the clinical relevance of our pipeline. These verification samples comprise real or synthetic stool samples with live or recombinant material of known composition. Two of the samples were excluded due to poor sequencing depth. The remaining samples were positive for 1 of 8 different bacterial strains corresponding to 5 of our clinical targets: V. cholerae (5), S. enterica (5), Escherichia-Shigella (13), Campylobacter (5) and C. difficile (5). All of these verification samples were correctly identified as having a relative abundance of the clinical target well above our defined healthy reference range (Fig 4). Five samples containing Yersinia were tested as a negative control. Although Yersinia was included in our preliminary target list, it did not pass our stringent bioinformatics QC thresholds for accurate identification. As expected, the relative abundance of the 28 clinical targets was in the healthy range for the Yersinia positive samples, as shown for Escherichia-Shigella (Fig 4). | study | 100.0 |
Commercially available verification samples (Luminex) containing real or synthetic stool samples positive for at least one control taxon from the target panel were tested using the DNA extraction, amplification and bioinformatics pipeline described in this paper. Of the 35 samples on this panel, 33 yielded 10,000 or more reads. Together, these 33 samples contained the 5 pathogenic taxa in our target list, all of which were accurately identified at a level above the maximum value of the healthy range (red lines). All 33 control samples tested within the healthy range for the remainder of the taxa on our panel (not shown), and thus were considered negative for the pathogenic taxa shown here. Five samples positive for Yersinia, a genus that is not present in our target list, were included as additional negative controls. These samples are visualized for the Escherichia-Shigella genus as they contained DNA for this taxon within the healthy range. | study | 100.0 |
Accurate detection of microorganisms in the context of a healthy reference range can be of great use to physicians. All of the 28 microorganisms successfully identified using 16S rRNA gene sequencing are associated with specific health conditions. For example, 2 of the microorganisms on our panel, Escherichia-Shigella and Ruminococcus, are associated with Crohn’s disease [32–37], while 5 other organisms, Akkermansia muciniphila, Bifidobacterium, Dialister invisus, Odoribacter and Roseburia, are inversely associated with Crohn’s disease [32,35–38] (Fig 5, S2 Table). To help diagnose and monitor this condition and distinguish it from other conditions with other microbial associations, it is essential to sequence a panel of microorganisms. The combinatorial information of which organisms are outside of the healthy range can be used by a physician to augment a treatment plan. For example, reducing the intake of animal based diets and diets high in resistant starches to reduce Ruminococcus [39–41] and the consumption of probiotics, inulin and oligofructoses to increase levels of Bifidobacterium . | study | 98.25 |
All of the 28 taxa on the test have been associated with human health in the gut microbiome. Here we show the associations for 13 specific conditions. 13 of the taxa are associated with health conditions, meaning that these microorganisms have been shown to be elevated in patients suffering from these conditions. The 11 microorganisms that are inversely associated were found to be less abundant in people who have this condition in the scientific literature (S2 Table). 4 taxa are associated with some and inversely associated with other conditions. Interestingly, both elevated and reduced levels of Lactobacillus have been associated with obesity [44–46]. | study | 99.94 |
The accurate detection of a great number of microorganisms within a stool sample is critical to initiate the appropriate treatment in a clinical setting. Here we have shown that 16S rRNA gene sequencing can accurately detect and quantify clinically relevant levels of 28 target bacteria and archaea. We demonstrate that many prokaryotic targets identified from the literature as associated with human health can be consolidated in an assay, and further that relating the relative levels of bacteria and archaea to a healthy reference range enables the reporting of positive results only when clinically relevant. | study | 100.0 |
The selection of microorganisms for this panel was based on studies in medical journals and peer-reviewed articles. While all targets are relevant on their own, there is some overlap in the consolidated test. For example, while the Salmonella genus is unquestionably clinically relevant, testing for the genus when the test already includes the Salmonella enterica species might be clinically redundant. The only other species of Salmonella is Salmonella bongori, a species that rarely infects humans and is mostly relevant to lizards . In our dataset of nearly 900 stool samples from healthy individuals, eight samples tested positive for the genus-level Salmonella target (S3 Table). In 6 of these, the relative Salmonella-genus abundance was less than 0.01%, the clinical relevance of which remains unclear. In one of the two remaining subjects, both Salmonella-genus and S. enterica abundance values were 0.674%, suggesting the same target was detected. In the remaining sample, Salmonella-genus was present at 1.84% but S. enterica was not detected, suggesting that this individual might have been colonized with S. bongori. Of note, none of these individuals reported having gastrointestinal problems. It remains to be determined whether these low counts of Salmonella are suggestive of the presence of clinically irrelevant, yet-uncharacterized strains, as has been reported in cattle . | study | 100.0 |
While medical diagnosis has traditionally been focused on pathogens, research on the whole microbiome and its correlations with gut health continues to emerge . The test panel presented here reports on some microorganisms that are not usually interrogated in the clinic but provide additional insight into the overall gut health of a patient in a clinical setting (S2 Table). Because our detection method is based on DNA sequencing, the target panel can readily be expanded if new information about clinically important microorganisms arises. Because 16S rRNA gene sequencing identifies and quantifies the bacteria and archaea in a sample, relevant microbial metrics such as a microbiome diversity score can also be obtained, in addition to the information about individual targets, to provide a comprehensive overview of gastrointestinal health . | review | 99.9 |
As any rRNA gene based test, this assay has limitations. The test only detects and analyzes a short, specific genomic region, and taxonomic resolution or functional inference is therefore limited. For example, this assay cannot recognize the different serovars within S. enterica, or detect toxin genes that could distinguish pathogenic C. difficile or Escherichia strains from nonpathogenic strains, or resolve species within some of the genus-level targets. The correlation—or lack thereof—of 16S rRNA-based phylogenetic sequence identities with taxonomic levels such as genus or species has been extensively discussed elsewhere [51–54]. | study | 83.4 |
16S rRNA gene sequencing as a clinical screening tool for gut-related conditions has many advantages over traditional culture-based techniques, including ease of sampling, scalability of the test, no need for human interpretation, and the ability to provide additional information about gut health. Most importantly, it can determine the relative abundances of multiple microbial targets, and can therefore be used to detect potential deviations of one or many taxa from that of a healthy cohort. Defining the healthy ranges for gut microbes with known clinical relevance, as done in this study, is likely to bring the analysis of the composition of the gut microbiome one step closer to being part of routine health care analysis [55–57]. Thus, this method of detection for multiple clinically relevant microbial targets is a promising addition to current diagnostic techniques and treatment options. | study | 99.94 |
The 46 targets identified from literature and available clinical tests comprise 15 genera and 31 species. The bioinformatics pipeline for accurate detection of the maximum number of targets is optimized based on the performance metrics Sensitivity, Specificity, Precision and Negative Predictive Value (NPV) as determined with a manually curated amplicon database (described in S1 Doc). The metrics are calculated based on the number of true positives (TP), true negatives (TN), false positives (FP) and false negatives (FN) as follows: specificity = TN / (TN + FP), sensitivity = TP / (TP + FN), precision = TP / (TP + FP) and negative predictive value (NPV) = TN / (TN + FN). | study | 99.94 |
All of the 28 taxa on the test have been associated with human health in the gut microbiome. This table has the associations for 13 specific conditions as identified in the scientific literature. Taxa are either associated or inversely associated. Microorganisms that associated with conditions have been shown to be elevated in patients suffering from these conditions. Microorganisms that are inversely associated were found to be less abundant in people who have this condition in the scientific literature. | study | 99.9 |
A cohort of 897 self-reported healthy individuals from the uBiome microbiome research study was selected to define the healthy reference ranges for the relative abundances of 28 clinical targets in stool samples. The relative abundances for each target in each sample are presented as a percentage. The total number of reads in each sample is also noted. | study | 100.0 |
In 2008, the World Health Organisation Commission on Social Determinants of Health called for ‘closing of the gap’ in health inequalities within a generation. Reducing health inequalities has been a priority for successive UK governments . The needs of the most marginalised groups have however, been neglected. Gypsies and Travellers are one socially excluded group where evidence for improving health is weakest . It is estimated that there are 150,000–300,000 Gypsy/Travellers in the UK , this however is likely to be an underestimate. Due to widespread stigma and discrimination, many Gypsy/Travellers do not disclose their identity . This paper provides an overview of a multi- component study that aims to strengthen the evidence regarding how to improve uptake and delivery of health services and thereby reduce health inequalities for Gypsy/Travellers. | review | 99.9 |
We use the term ‘Gypsy/Travellers’ to include all those with a cultural tradition of, and commitment to nomadism, including those who live permanently or temporarily in settled housing. This broad definition includes individuals from different socio-cultural backgrounds including Romany (English) Gypsies, Irish Travellers, Scottish Gypsy/Travellers and Eastern European Roma communities. However, there are contested definitions of Gypsy/Travellers reflecting complex cultural and/or linguistic differences between communities . Therefore there are likely to be different health needs and experiences of health care between and within diverse Gypsy/Traveller communities . | other | 99.9 |
Although Gypsy/Traveller communities are diverse, and robust evidence of health needs is lacking due to unknown population size and lack of systematic monitoring [8, 9], there is consensus that Gypsy/Travellers in the UK have poorer health and lower life expectancy than the general population and other disadvantaged groups [7, 8, 10–15]. This includes increased maternal and child mortality [8, 13, 16], and in children, high rates of accidental injury, infections and accident and emergency department attendance [11, 17]. Studies have found low uptake of preventative health services including childhood immunisations [18–21], significantly increasing risk of preventable disease [22, 23]. Gypsy/Travellers have poor dental health with high unmet need for dental care [24, 25]. | review | 99.75 |
Some of the reasons why Gypsy/Travellers are vulnerable to poor health outcomes, even when compared to other disadvantaged groups include poor living conditions, high rates of homelessness, low educational achievement, social exclusion and widespread prejudice and discrimination . Gypsy/Travellers also face many barriers to accessing healthcare. For some, a mobile lifestyle is key , however, poor access is also experienced by settled Gypsy/Travellers. This is underpinned by complex factors including stigmatisation and lack of understanding by healthcare staff [10, 12, 27]. Reported cultural barriers include normalisation of ill-health and pride in self-reliance . However, it is unclear how these interact with social exclusion and poverty . | other | 98.94 |
These multiple factors alongside poor quality care that does not meet healthcare needs may lead to low expectations and mistrust of health services and healthcare personnel [27, 30]. Trust in services and personnel is associated with increased utilisation of healthcare, and improved health behaviours and quality of care [31–33]. Community engagement strategies have the potential to enhance trust and ensure services are tailored to the needs of specific populations [34–36]. “Community engagement” is one of several overlapping terms (others include “community involvement”, “community participation”, and “community development”) used to describe activities that are aimed at enabling communities to participate in decisions that affect their lives and improve their health and wellbeing, including planning, design, delivery and evaluation of health services [34–36]. | review | 99.7 |
Our research investigates which approaches to community engagement are likely to enhance trust between Gypsy/Travellers and mainstream health services. The focus is maternity services, early years’ health services and child dental health services. The objectives are to:describe activities and methods used to engage Gypsy/Travellers in health services and to assess the extent to which they focus on developing trust;investigate the extent to which different engagement activities used by health services enhance trust and increase uptake of maternity services, early years’ services and child dental health services by Gypsy/Travellers;examine the knowledge, attitudes/beliefs and experiences of Gypsy/Travellers of maternity services, early years’ services and child dental health services;identify different approaches to enhancing Gypsy/Travellers’ trust in maternity services, early years’ services and child dental health services and explore the implications for policy and practice;estimate the potential implementation costs of different approaches to enhancing Gypsy/Travellers’ trust in maternity services, early years’ services and child dental health services; andexplore whether community engagement approaches that work to enhance Gypsy/Travellers’ trust in maternity services, early years’ services and child dental health services are potentially applicable to other health services/vulnerable communities. | study | 99.9 |
The study team are being advised by two advisory groups; a Stakeholder Advisory Group comprising health professionals, policy advisors and academics, and a User Advisory Group, hosted by Leeds Gypsy and Traveller Exchange (Leeds GATE), comprising women representing Romany Gypsy, Irish Traveller and Eastern European Roma communities. | other | 99.94 |
In May 2015, we searched 21 online databases: MEDLINE (via OVID), Embase (via OVID), CINAHL (via EBSCO), Cochrane Database of Systematic Review, Database of Abstracts of Reviews of Effects, Health Technology Assessment database, CENTRAL, Social Science Citation Index (via Web of Knowledge), PsycINFO (via OVID), HMIC (via OVID), ASSIA (via Proquest), Social Policy and Practice (via OVID), Bibliomap (via the EPPI-Centre databases), DoPHER (via the EPPI-Centre databases), TRoPHI (via the EPPI-Centre databases), the Campbell Library, Social Care Online and the British Nursing Index (via Proquest), Research Councils UK – Gateway to Research, OAIster and OpenGrey. In addition, to identify work-in-progress and unpublished studies, a focused Google search was conducted. Reference lists of relevant literature reviews were examined to locate further studies. Search terms, developed with an Information Specialist, combined thesaurus and free-text terms. The search structure was (Gypsy/Traveller communities) AND (general healthcare services OR maternal and child healthcare services OR child dental health care services OR community engagement interventions). | review | 99.9 |
Publications were included if they reported methods and findings of a primary study, focused on Gypsy/Travellers, included data that illuminated how, why and where Gypsy/Travellers engage with health care services and were published in English after the year 2000. All study designs were included. | study | 72.44 |
Title and abstracts were screened independently by two reviewers and discrepancies discussed with a third reviewer. Full texts of publications appearing to meet the inclusion criteria were assessed independently by two reviewers and discrepancies discussed with a third reviewer. | study | 94.6 |
An evidence matrix indicating key findings and the robustness of methodology, accompanied by a narrative synthesis is the key output of this review. Review one also provides a sampling frame to feed relevant studies into the realist synthesis of community engagement approaches . Finally, we also conducted an appraisal of the economics literature applying focus to any economic evaluations or discussions of cost associated with engagement programmes. Economics literature was primarily identified via the first search though an additional search was also undertaken using NHS EED, the only remaining database for economic evaluations (published until 2014). Review one is in the write-up phase. | review | 99.9 |
Review two is a systematic review of secondary (review) literature to examine how ‘trust’ has been conceptualised and theorised in any healthcare setting. Trust is a complex term, frequently used but rarely defined. We are particularly interested in describing frameworks/models that may be relevant in explaining the relationship between vulnerable communities and mainstream health and social care services. Trust is however, a challenging term to search for (a recently updated Cochrane review on interventions to enhance trust retrieved 14057 records for initial screening ). Since we were interested in understanding and describing the concept of trust within a health care context generally, we focused on secondary literature. | review | 99.9 |
We searched 15 online databases in May 2015: MEDLINE (via OVID), Embase (via OVID), CINAHL (via EBSCO), Cochrane Database of Systematic Review, Database of Abstracts of Reviews of Effects, Health Technology Assessment database, Social Science Citation Index (via Web of Knowledge), PsycINFO (via OVID), HMIC (via OVID), ASSIA (via Proquest), Social Policy and Practice (via OVID), Bibliomap (via the EPPI-Centre databases), DoPHER (via the EPPI-Centre databases), TRoPHI (via the EPPI-Centre databases), the Campbell Library. The search structure was: “trust” synonyms AND “systematic review” synonyms. | review | 98.8 |
Title and abstracts were screened independently by two reviewers and discrepancies discussed with a third reviewer. Full texts of publications appearing to meet the inclusion criteria were assessed independently by two reviewers and discrepancies discussed with a third reviewer. | study | 94.6 |
Data were extracted for each eligible study by one reviewer and checked by a second reviewer regarding: methods; review aims; and key findings specifically related to understanding, describing or exploring trust. A detailed narrative synthesis of the findings is currently under construction. | review | 99.8 |
Review three is a realist synthesis of community engagement approaches to enhance trust and increase Gypsy/Travellers’ participation in health services. Four hypotheses, derived from published literature, were developed to provide initial direction for the review:Community engagement is an effective and cost-effective strategy for enhancing the confidence and trust of Gypsy/Travellers in mainstream services ;Approaches to community engagement that work to enhance trust and increase uptake of services with some participants may not work with Gypsy/Travellers because of the longstanding experience of social exclusion and discrimination, low education and literacy levels and mistrust of authority ;Successful community engagement will be underpinned by genuine involvement of community members (i.e. not tokenistic), honest appraisal of what can be achieved (not raising expectations that cannot be met) and continuity of trusted personnel .Community engagement between Gypsy/Travellers and mainstream health services can be facilitated effectively by civil society Gypsy/Traveller organisations [8, 39]. | review | 99.9 |
Approaches to community engagement that work to enhance trust and increase uptake of services with some participants may not work with Gypsy/Travellers because of the longstanding experience of social exclusion and discrimination, low education and literacy levels and mistrust of authority ; | other | 99.94 |
Realist synthesis is appropriate for understanding complex interventions, in this case the interaction between trust and community engagement. Realist reviews focus on developing theories of what works for whom and in what circumstances thereby accounting for context, mechanisms and outcomes in the process of systematically synthesising relevant literature . Our realist synthesis will draw on data derived from reviews one and two, but will also include purposive additional searching for literature that focuses on engagement approaches with Gypsies, Travellers and Roma. The output of the realist synthesis will be an evaluative framework for explaining and understanding the complex and multi-faceted nature of engagement with health services. We plan to involve the study Stakeholder Advisory group in further stages of the review process. Review three is underway. | review | 99.9 |
A semi-structured, web-based questionnaire will be purpose designed to elicit views on how to enhance trust in mainstream services; the range of activities/methods used by maternity, early years’ and child dental health services to engage Gypsy/Travellers and any associated costs; perceptions of the success of different approaches to developing trust; and barriers to, and suggested strategies for, enhancing trust, including examples of good practice. The questions will be based on the aims of the study, findings of the literature reviews, and the views of the Stakeholder Advisory Group. The consultation will be delivered using the Bristol Online Survey tool , and will be disseminated by e-mail. We aim to include the views of three main groups, from across the UK, through purposive sampling:Individuals working in civil society organisations who represent or advocate for Gypsy/Traveller communities. These include UK-wide organisations such as Friends, Family and Travellers; National Federation of Gypsy Liaison Groups; and local/regional groups such as Traveller Movement (London); Derbyshire Gypsy Liaison Groups; One voice for Travellers (Cambridgeshire); Roma Support Group (London); Romani Arts Company (Wales) An munia Tober (Northern Ireland) and Article 12 Young Gypsy Lives (Scotland). We will also include organisations who represent/advocate for users of maternity users (nct – formerly known as the National Childbirth Trust), and children (Save the Children UK; Children’s Society). We were unable to identify any civil society organisations focusing on child dental health.Health and social care practitioners delivering maternity, early years’ and child dental health services (e.g. midwives, health visitors, general practitioners, and community dentists, who work with Gypsy/Travellers communities). We aim to include healthcare practitioners who have a specialist role regarding service provision for Gypsy/Travellers, and those who provide care for Gypsy/Travellers as part of mainstream services. We will reach these practitioners through professional organisations and networks such as Midwifery Supervisors network; Infant Feeding Leads network; Health Visitors Institute; Royal College of General Practitioners; Royal College of Paediatrics and Child Health; Faculty of Public Health; British Dental Association and British Society of Paediatric Dentistry.Local policymakers and health and social care service commissioners (e.g. Directors of Public Health and Dental Public Health, health improvement specialists, health inequality teams, clinical commissioning groups and Local Authorities). | study | 98.44 |
Individuals working in civil society organisations who represent or advocate for Gypsy/Traveller communities. These include UK-wide organisations such as Friends, Family and Travellers; National Federation of Gypsy Liaison Groups; and local/regional groups such as Traveller Movement (London); Derbyshire Gypsy Liaison Groups; One voice for Travellers (Cambridgeshire); Roma Support Group (London); Romani Arts Company (Wales) An munia Tober (Northern Ireland) and Article 12 Young Gypsy Lives (Scotland). We will also include organisations who represent/advocate for users of maternity users (nct – formerly known as the National Childbirth Trust), and children (Save the Children UK; Children’s Society). We were unable to identify any civil society organisations focusing on child dental health. | other | 99.94 |
Health and social care practitioners delivering maternity, early years’ and child dental health services (e.g. midwives, health visitors, general practitioners, and community dentists, who work with Gypsy/Travellers communities). We aim to include healthcare practitioners who have a specialist role regarding service provision for Gypsy/Travellers, and those who provide care for Gypsy/Travellers as part of mainstream services. We will reach these practitioners through professional organisations and networks such as Midwifery Supervisors network; Infant Feeding Leads network; Health Visitors Institute; Royal College of General Practitioners; Royal College of Paediatrics and Child Health; Faculty of Public Health; British Dental Association and British Society of Paediatric Dentistry. | other | 99.9 |
Analysis of the online consultation will include: proportions of respondents who agree/disagree with evidence–derived statements; and thematic analysis of free text questions including exploration of similarities and differences between different stakeholders. | other | 99.8 |
The online consultation findings will: a) inform the selection of case studies, i.e. if a successful approach to community engagement with Gypsy/Travellers is identified, we may select the location as a case study site; b) provide a national context to locate the findings of the case studies; and c) provide a community of interest for dissemination of the study findings. | other | 99.7 |