Guidance for ensuring fair and ethical broad consent for future use. A scoping review protocol.

Introduction: Broad consent for future use is the reuse of data and/or samples collected by a study by researchers who may not be affiliated with the original study team for purposes that may differ from the objectives of the original study. Sharing participant-level data and samples collected from research participants facilitates reuse and transparency and can accelerate drug or vaccine development, research findings, and translation. Data reuse and synthesis help prevent unnecessary research, thereby respecting research participants time and efforts and building their trust in the research process. Despite these myriad benefits, data and sample sharing represent a significant investment of time for the team that collected the data or samples, and may present additional risks for research participants, including that of re-identifiability and incidental findings, or for the source community. This scoping review will summarize existing guidance on broad consent for future use and highlight evidence gaps related to the ethical, equitable implementation of broad consent for future use. Methods and analysis: We will apply the Arskey and O’Malley scoping review methodology and best practice as outlined in the Joanna Briggs scoping review guidelines. The research questions have been identified through a literature review and consultation with subject-matter experts. The systematic search will be conducted in three databases using a tailored search strategy. We will search the reference lists of included articles or related systematic reviews for additional citations. The title-abstract and full text screening and charting the data will be conducted independently by two reviewers. Discrepancies will be resolved by a third reviewer. Results will be summarized in narrative form. Ethics and dissemination: This scoping review summarizes findings from existing publications and grey literature rather than primary data and, as such, does not require ethics review. Findings will be disseminated through an open access publication and webinar.

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The on-premise data sharing infrastructure e!DAL: Foster FAIR data for faster data acquisition

GigaScience ◽

10.1093/gigascience/giaa107 ◽

2020 ◽

Vol 9 (10) ◽

Cited By ~ 1

Author(s):

Daniel Arend ◽

Patrick König ◽

Astrid Junker ◽

Uwe Scholz ◽

Matthias Lange

Keyword(s):

Data Management ◽

Data Storage ◽

Best Practice ◽

Research Process ◽

Research Data ◽

Primary Data ◽

Data Repository ◽

Plant Genomics ◽

Quality Of Data

Abstract Background The FAIR data principle as a commitment to support long-term research data management is widely accepted in the scientific community. Although the ELIXIR Core Data Resources and other established infrastructures provide comprehensive and long-term stable services and platforms for FAIR data management, a large quantity of research data is still hidden or at risk of getting lost. Currently, high-throughput plant genomics and phenomics technologies are producing research data in abundance, the storage of which is not covered by established core databases. This concerns the data volume, e.g., time series of images or high-resolution hyper-spectral data; the quality of data formatting and annotation, e.g., with regard to structure and annotation specifications of core databases; uncovered data domains; or organizational constraints prohibiting primary data storage outside institional boundaries. Results To share these potentially dark data in a FAIR way and master these challenges the ELIXIR Germany/de.NBI service Plant Genomic and Phenomics Research Data Repository (PGP) implements a “bring the infrastructure to the data” approach, which allows research data to be kept in place and wrapped in a FAIR-aware software infrastructure. This article presents new features of the e!DAL infrastructure software and the PGP repository as a best practice on how to easily set up FAIR-compliant and intuitive research data services. Furthermore, the integration of the ELIXIR Authentication and Authorization Infrastructure (AAI) and data discovery services are introduced as means to lower technical barriers and to increase the visibility of research data. Conclusion The e!DAL software matured to a powerful and FAIR-compliant infrastructure, while keeping the focus on flexible setup and integration into existing infrastructures and into the daily research process.

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Young people’s advisory groups in health research: scoping review and mapping of practices

Archives of Disease in Childhood ◽

10.1136/archdischild-2020-320452 ◽

2020 ◽

pp. archdischild-2020-320452 ◽

Cited By ~ 1

Author(s):

Elise Sellars ◽

Gabriela Pavarini ◽

Daniel Michelson ◽

Cathy Creswell ◽

Mina Fazel

Keyword(s):

Scoping Review ◽

Health Research ◽

Empirical Studies ◽

Research Process ◽

Primary Data ◽

Research Activity ◽

Level Of Involvement ◽

Additional Information ◽

Advisory Groups ◽

The Impact

BackgroundYoung people’s advisory groups (YPAGs) for research are comprised of children or adolescents who work with researchers to shape different stages of the research process. Their involvement is expected to ensure studies better reflect the preferences and needs of targeted youth populations. However, despite their increasing use in health research, there is little systematic evidence on the methods and impacts associated with YPAGs.MethodTo address this gap, we conducted a scoping review of YPAGs in youth-focused health studies. We systematically searched MEDLINE for empirical studies in populations between 12 years and 18 years of age published in 2019. If a potential YPAG was identified, authors were contacted for additional information about the activities and level of involvement of the YPAG.FindingsOf all studies that collected primary data from persons aged 12–18 years, only 21 studies reported using youth advice during their research. This represents less than 1% of all published empirical child and adolescent studies. There was variation in the type of research activity undertaken by YPAGs and their level of involvement. Most studies involved YPAGs in co-production of research design and/or in dissemination activities. The majority of authors that responded were positive about the impact of YPAGs.InterpretationRecommendations for consistent reporting of YPAG involvement in empirical studies include reporting on the match between YPAG and study populations, frequency/format of meetings, and the nature and level of involvement.

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Consumer perceptions of antimicrobial use in animal husbandry: A scoping review

PLoS ONE ◽

10.1371/journal.pone.0261010 ◽

2021 ◽

Vol 16 (12) ◽

pp. e0261010

Author(s):

Jaime R. Barrett ◽

Gabriel K. Innes ◽

Kelly A. Johnson ◽

Guillaume Lhermie ◽

Renata Ivanek ◽

...

Keyword(s):

Antimicrobial Resistance ◽

Scoping Review ◽

Grey Literature ◽

Animal Husbandry ◽

The United States ◽

Consumer Perceptions ◽

Primary Data ◽

Meat Production ◽

Antimicrobial Use ◽

The European Union

Antimicrobial use in animal agriculture is often perceived to play a role in the emerging threat of antimicrobial resistance. Increased consumer awareness of this issue places pressure on animal husbandry to adopt policies to reduce or eliminate antimicrobial use. We use a scoping review methodology to assess research on consumer perceptions of antimicrobial drugs in meat products in the United States, Canada, or the European Union. Evaluating peer-reviewed and grey literature, we included studies for assessment if they met these topical and geographic requirements, involved primary data collection, and were originally published in English. Our screening process identified 124 relevant studies. Three reviewers jointly developed a data charting form and independently charted the contents of the studies. Of the 105 studies that measured consumer concern, 77.1% found that consumers were concerned about antimicrobial use in meat production. A minority of studies (29.8% of all studies) queried why consumers hold these views. These studies found human health and animal welfare were the main reasons for concern. Antimicrobial resistance rarely registered as an explicit reason for concern. A smaller group of studies (23.3%) measured the personal characteristics of consumers that expressed concern about antimicrobials. Among these studies, the most common and consistent features of these consumers were gender, age, income, and education. Regarding the methodology used, studies tended to be dominated by either willingness-to-pay studies or Likert scale questionnaires (73.64% of all studies). We recommend consideration of qualitative research into consumer views on this topic, which may provide new perspectives that explain consumer decision-making and mentality that are lacking in the literature. In addition, more research into the difference between what consumers claim is of concern and their ultimate purchasing decisions would be especially valuable.

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Investigating and evaluating evidence of the behavioural determinants of adherence to social distancing measures – A protocol for a scoping review of COVID-19 research

HRB Open Research ◽

10.12688/hrbopenres.13099.1 ◽

2020 ◽

Vol 3 ◽

pp. 46 ◽

Cited By ~ 2

Author(s):

Chris Noone ◽

Nikolett Warner ◽

Molly Byrne ◽

Hannah Durand ◽

Kim L. Lavoie ◽

...

Keyword(s):

Scoping Review ◽

Large Scale ◽

Best Practice ◽

Data Extraction ◽

Grey Literature ◽

Theoretical Domains Framework ◽

Open Science ◽

Quality Appraisal ◽

Social Distancing ◽

Behavioural Determinants

Background: The WHO has declared the outbreak of coronavirus disease 2019 (COVID-19) as a pandemic. With no vaccine currently available, using behavioural measures to reduce the spread of the virus within the population is an important tool in mitigating the effects of this pandemic. As such, social distancing measures are being implemented globally and have proven an effective tool in slowing the large-scale spread of the virus. Aim: This scoping review will focus on answering key questions about the state of the evidence on the behavioural determinants of adherence to social distancing measures in research on COVID-19. Methods: A scoping review will be conducted in accordance with guidelines for best practice. Literature searches will be conducted using online databases and grey literature sources. Databases will include Medline, Web of Science, Embase and PsycInfo, alongside relevant pre-print servers. Grey literature will be searched on Google Scholar. Screening, data extraction and quality appraisal will be conducted independently by two members of the research team, with any discrepancies resolved by consensus discussion and an additional team member if needed. Quality appraisal will be conducted using the Cochrane’s ROBINS-I tool, the Cochrane Risk of Bias tool, and the JBI Critical Appraisal Checklist where appropriate. Results will be analysed by mapping findings onto the Theoretical Domains Framework and visualising characteristics of the included studies using EviAtlas. This scoping review is pre-registered with Open Science Framework. Conclusions The results of this study may facilitate the systematic development of behavioural interventions to increase adherence to social distancing measures.

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The relationships between rugby union and health: a scoping review protocol

BMJ Open Sport & Exercise Medicine ◽

10.1136/bmjsem-2019-000593 ◽

2019 ◽

Vol 5 (1) ◽

pp. e000593 ◽

Cited By ~ 2

Author(s):

Steffan Arthur Griffin ◽

Nirmala Kanthi Panagodage Perera ◽

Andrew Murray ◽

Catherine Hartley ◽

John H M Brooks ◽

...

Keyword(s):

Scoping Review ◽

Best Practice ◽

Vigorous Physical Activity ◽

Grey Literature ◽

Research Priorities ◽

Rugby Union ◽

Original Research ◽

Physical And Mental Health ◽

Key Concepts ◽

Review Protocol

IntroductionRugby union is played by over eight million people across the world and is considered a form of moderate-to-vigorous physical activity. Consequently, playing rugby may confer health benefits; however, to date, the principal focus of research has been on associated injuries and potential detrimental long-term health sequelae. This protocol outlines the methods behind studying any potential associations between rugby union and both physical and mental health.Methods and analysisBest practice methodological frameworks (Arksey and O'Malley, Levac et al and the Joanna Briggs Institute) and previously published scoping review protocols in sport informs the methodology of this protocol. This protocol enables us to map the key concepts and evidence available, summarise and share existing research ﬁndings, and identify research gaps in the current literature. A three-step search strategy will identify reviews, original research, and published and grey literature. An initial search will identify suitable search terms, followed by a search using keyword and index terms. Two reviewers will independently screen identiﬁed studies for final inclusion.DisseminationWhen publishing the scoping review, we will map key concepts and evidence both numerically and thematically, as well as identify key research priorities for further studies. The review will subsequently be disseminated to stakeholder groups, practitioners and policymakers through a variety of peer-reviewed and non-peer-reviewed publications, conferences and via multimedia platforms.

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Educating hospital patients to prevent falls: protocol for a scoping review

BMJ Open ◽

10.1136/bmjopen-2019-030952 ◽

2019 ◽

Vol 9 (9) ◽

pp. e030952 ◽

Cited By ~ 3

Author(s):

Hazel Heng ◽

Dana Jazayeri ◽

Louise Shaw ◽

Debra Kiegaldie ◽

Anne-Marie Hill ◽

...

Keyword(s):

Patient Education ◽

Scoping Review ◽

Best Practice ◽

Grey Literature ◽

Mitigation Strategies ◽

Falls Prevention ◽

Cochrane Central Register ◽

Medical Subject Headings ◽

Educational Design ◽

Accompanying Injuries

IntroductionFalls prevention in hospitals is an ongoing challenge worldwide. Despite a wide variety of recommended falls mitigation strategies, few have strong evidence for effectiveness in reducing falls and accompanying injuries. Patient education programmes that promote engagement and enable people to understand their heightened falls risk while hospitalised are one approach. The aim of this scoping review is to examine the content, design and outcomes of patient education approaches to hospital falls prevention. As well as critiquing the role of patient education in hospital falls prevention, strategies that can be used in clinical practice shall be recommended.Methods and analysisThe analysis will apply the methodological framework developed by Arksey and O’Malley and refined by the Joanna Briggs Institute. An initial limited search of Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PubMed will be completed to identify keywords and index terms. A developed search strategy of Medical Subject Headings and text words will be conducted of PubMed, CINAHL, Cochrane Central Register of Controlled Trials, Allied and Complementary Medicine Database, PsychINFO, Education Resources Information Center and grey literature databases from January 2008 to current. The reference lists of included articles will be hand searched for additional studies. Two reviewers will screen the titles and abstracts independently and analyse the full text of potential articles based on the inclusion and exclusion criteria. The data will be extracted using a structured data form. Thematic analysis and numerical synthesis of the data will be conducted, and key themes will be identified.Ethics and disseminationResults of this scoping review will illuminate the designs and outcomes of patient education research for hospital falls prevention in the current literature. It is anticipated that the findings will highlight best-practice educational design to inform the development of future patient-focused education for falls prevention. Study findings will be presented at relevant conferences and public forums, and published in peer-reviewed journals. Ethics approval is not required.

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Urban green spaces and cancer: a protocol for a scoping review

BMJ Open ◽

10.1136/bmjopen-2017-018851 ◽

2018 ◽

Vol 8 (2) ◽

pp. e018851 ◽

Cited By ~ 4

Author(s):

Marion Porcherie ◽

Mathilde Lejeune ◽

Marion Gaudel ◽

Jeanine Pommier ◽

Emmanuelle Faure ◽

...

Keyword(s):

Urban Space ◽

Scoping Review ◽

Green Space ◽

Grey Literature ◽

Controlled Vocabulary ◽

Green Spaces ◽

Primary Data ◽

Urban Green ◽

Hand Search ◽

Urban Green Spaces

IntroductionGreen space in the built environment is an important topic on the health agenda today. Studies have shown that access to green spaces is associated with better mental and physical health, yet green spaces can also be detrimental to health if they are not managed appropriately. Despite the increasing interest in urban green spaces, little research has so far been conducted into the links between green spaces and cancer.ObjectiveThe purpose of this scoping review is therefore to map the literature available on the types of relationship between urban green spaces and cancer.Method and analysisWe followed the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols 2015 guideline to report the protocol. To conduct this scoping review, we will use a structured search strategy based on controlled vocabulary and relevant key terms related to green space, urban space and cancer. We will search MEDLINE (PubMed), GreenFILE (EBSCOhost), Cumulative Index to Nursing and Allied Health Literature (EBSCOhost) and ScienceDirect as electronic database as well as hand-search publications for grey literature. This review will therefore provide evidence on this current topic, one which could have practical implications for policy-makers involved in choices which are more conducive to healthy living.Ethics and disseminationNo primary data will be collected since all data that will be presented in this review are based on published articles and publicly available documents, and therefore ethics committee approval is not a requirement. The findings of this review will be presented at workshops and conferences, and will be submitted for publication in a peer-reviewed journal.

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Dysphagia Therapy in Adults with a Tracheostomy: A Scoping Review Protocol

10.21203/rs.3.rs-593909/v2 ◽

2021 ◽

Author(s):

Waiza Kadri ◽

Rhiannon Halfpenny ◽

Breege Whiten ◽

Christina Smith ◽

Siofra Mulkerrin

Keyword(s):

Scoping Review ◽

Best Practice ◽

Data Extraction ◽

Grey Literature ◽

Therapeutic Interventions ◽

Current Evidence ◽

Future Research ◽

Limited Information ◽

Best Practice Guidelines ◽

Dysphagia Therapy

Abstract Background Swallowing impairment (dysphagia) and tracheostomy coexist. Research in this area has often provided an overview of dysphagia management as a whole, but there is limited information pertaining to specific dysphagia therapy in the tracheostomy population. The aim of this scoping review is to provide detailed exploration of the literature with regards to dysphagia therapeutic interventions in adults with a tracheostomy. The scoping review will describe current evidence and thus facilitate future discussions to guide clinical practice.Methods A scoping review using the Joanna Briggs Institute and Preferred Reporting Items for Systematic Reviews guideline will be used. Ten electronic databases from inception to July 2021and grey literature will be searched. From identified texts forward and backward citation chasing will be completed. Data extraction will compose of population demographics, aetiology and dysphagia therapy (type, design, dose and intensity). Number of citations and papers included into the scoping review will be presented visually.Discussion The scoping review aims to expand upon the existing literature in this field. A detailed description of the evidence is required to facilitate clinical discussions and develop therapeutic protocols in a tracheostomised population. The results of this scoping review will support future research in dysphagia therapy and provide the basis for development of best practice guidelines.

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Investigating and evaluating evidence of the behavioural determinants of adherence to social distancing measures – A protocol for a scoping review of COVID-19 research

HRB Open Research ◽

10.12688/hrbopenres.13099.2 ◽

2020 ◽

Vol 3 ◽

pp. 46

Author(s):

Chris Noone ◽

Nikolett Warner ◽

Molly Byrne ◽

Hannah Durand ◽

Kim L. Lavoie ◽

...

Keyword(s):

Scoping Review ◽

Large Scale ◽

Best Practice ◽

Data Extraction ◽

Grey Literature ◽

Theoretical Domains Framework ◽

Open Science ◽

Quality Appraisal ◽

Social Distancing ◽

Behavioural Determinants

Background: The WHO has declared the outbreak of coronavirus disease 2019 (COVID-19) as a pandemic. With no vaccine currently available, using behavioural measures to reduce the spread of the virus within the population is an important tool in mitigating the effects of this pandemic. As such, social distancing measures are being implemented globally and have proven an effective tool in slowing the large-scale spread of the virus. Aim: This scoping review will focus on answering key questions about the state of the evidence on the behavioural determinants of adherence to social distancing measures in research on COVID-19. Methods: A scoping review will be conducted in accordance with guidelines for best practice. Literature searches will be conducted using online databases and grey literature sources. Databases will include Medline, Web of Science, Embase and PsycInfo, alongside relevant pre-print servers. Grey literature will be searched on Google Scholar. Screening, data extraction and quality appraisal will be conducted by members of the research team, with any discrepancies resolved by consensus discussion. Quality appraisal will be conducted using the Cochrane’s ROBINS-I tool, the Cochrane Risk of Bias tool, and the JBI Critical Appraisal Checklist where appropriate. Results will be analysed by mapping findings onto the Theoretical Domains Framework and visualising characteristics of the included studies using EviAtlas. This scoping review is pre-registered with Open Science Framework. Conclusions The results of this study may facilitate the systematic development of behavioural interventions to increase adherence to social distancing measures.

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Protocol for a scoping review of multi-omic analysis for rare diseases

BMJ Open ◽

10.1136/bmjopen-2018-026278 ◽

2019 ◽

Vol 9 (5) ◽

pp. e026278 ◽

Cited By ~ 1

Author(s):

Katie Kerr ◽

Helen McAneney ◽

Amy Jayne McKnight

Keyword(s):

Rare Disease ◽

Scoping Review ◽

Large Scale ◽

Web Of Science ◽

Biomarker Discovery ◽

Grey Literature ◽

Primary Data ◽

Next Generation Sequencing Technology ◽

Disease Research ◽

Scoping Reviews

IntroductionThe development of next generation sequencing technology has enabled cost-efficient, large scale, multiple ‘omic’ analysis, including epigenomic, genomic, metabolomic, phenomic, proteomic and transcriptomic research. These integrated approaches hold significant promise for rare disease research, with the potential to aid biomarker discovery, improve our understanding of disease pathogenesis and identify novel therapeutic targets. In this paper we outline a systematic approach for a scoping review designed to evaluate what primary research has been performed to date on multi-omics and rare disease.Methods and analysisThis protocol was designed using the Joanna Briggs Institute methodology for scoping reviews. Databases to be searched will include: MEDLINE, EMBASE, PubMed, Web of Science, Scopus and Google Scholar for primary studies relevant to the key terms ‘multi-omics’ and ‘rare disease’, published prior to 30thDecember 2018. Grey literature databases GreyLit and OpenGrey will also be searched, as well as reverse citation screening of relevant articles and forward citation searching using Web of Science Cited Reference Search Tool. Data extraction will be performed using customised forms and a narrative synthesis of the results will be presented.Ethics and disseminationAs a secondary analysis study with no primary data generated, this scoping review does not require ethical approval. We anticipate this review will highlight a gap in rare disease research and provide direction for novel research. The completed review will be submitted for publication in peer-reviewed journals and presented at relevant conferences discussing rare disease research and/or molecular strategies.

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