scholarly journals A scoping review of considerations and practices for benefit sharing in biobanking

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Allan Sudoi ◽  
Jantina De Vries ◽  
Dorcas Kamuya
Keyword(s):  
Scoping Review ◽  
Health Research ◽  
Empirical Studies ◽  
Benefit Sharing ◽  
Cochrane Library ◽  
Policy And Practice ◽  
Online Databases ◽  
Expected Benefits ◽  
Future Policy ◽  
Distinct Features

Abstract Background Despite the rapid global growth of biobanking over the last few decades, and their potential for the advancement of health research, considerations specific to the sharing of benefits that accrue from biobanks have received little attention. Questions such as the types and range of benefits that can arise in biobanking, who should be entitled to those benefits, when they should be provided, by whom and in what form remain mostly unanswered. We conducted a scoping review to describe benefit sharing considerations and practices in biobanking in order to inform current and future policy and practice. Methods Drawing on the Arksey and O’Malley framework, we conducted a scoping review of the literature in three online databases (PubMed, Cochrane library, and Google Scholar). We extracted and charted data to capture general characteristics, definitions and examples of benefits and benefit sharing, justification for benefit sharing, challenges in benefit sharing, governance mechanisms as well as proposed benefit sharing mechanisms. Results 29 articles published between 1999 and 2020 met the inclusion criteria for the study. The articles included 5 empirical and 24 non-empirical studies. Only 12 articles discussed benefit sharing as a stand-alone subject, while the remaining 17 integrated a discussion of benefits as one issue amongst others. Major benefit sharing challenges in biobanking were found to be those associated with uncertainties around the future use of samples and in resultant benefits. Conclusion Most of the benefit sharing definitions and approaches currently in use for biobanking are similar to those used in health research. These approaches may not recognise the distinct features of biobanking, specifically relating to uncertainties associated with the sharing and re-use of samples. We therefore support approaches that allow decisions about benefit sharing to be made progressively once it is apparent who samples are to be shared with, the intended purpose and expected benefits. We also highlight gaps in key areas informing benefit sharing in biobanking and draw attention to the need for further empirical research.

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

2020 ◽  
pp. archdischild-2020-320452 ◽  
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.

scholarly journals Interventions to improve adherence to reporting guidelines in health research: a scoping review protocol

BMJ Open ◽  
2017 ◽  
Vol 7 (11) ◽  
pp. e017551 ◽  
Author(s):  
David Blanco ◽  
Jamie J Kirkham ◽  
Douglas G Altman ◽  
David Moher ◽  
Isabelle Boutron ◽  
...  
Keyword(s):  
Scoping Review ◽  
Health Research ◽  
Data Extraction ◽  
Grey Literature ◽  
Reporting Guidelines ◽  
Cochrane Library ◽  
Improve Compliance ◽  
Review Protocol ◽  
Journal Policies ◽  
Research Stage

IntroductionThere is evidence that the use of some reporting guidelines, such as the Consolidated Standards for Reporting Trials, is associated with improved completeness of reporting in health research. However, the current levels of adherence to reporting guidelines are suboptimal. Over the last few years, several actions aiming to improve compliance with reporting guidelines have been taken and proposed. We will conduct a scoping review of interventions to improve adherence to reporting guidelines in health research that have been evaluated or suggested, in order to inform future interventions.Methods and analysisOur review will follow the Joanna Briggs Institute scoping review methods manual. We will search for relevant studies in MEDLINE, EMBASE and Cochrane Library databases. Moreover, we will carry out lateral searches from the reference lists of the included studies, as well as from the lists of articles citing the included ones. One reviewer will screen the full list, which will be randomly split into two halves and independently screened by the other two reviewers. Two reviewers will perform data extraction independently. Discrepancies will be solved through discussion. In addition, this search strategy will be supplemented by a grey literature search. The interventions found will be classified as assessed or suggested, as well as according to different criteria, in relation to their target (journal policies, journal editors, authors, reviewers, funders, ethical boards or others) or the research stage at which they are performed (design, conducting, reporting or peer review). Descriptive statistical analysis will be performed.Ethics and disseminationA paper summarising the findings from this review will be published in a peer-reviewed journal. This scoping review will contribute to a better understanding and a broader perspective on how the problem of adhering better to reporting guidelines has been tackled so far. This could be a major first step towards developing future strategies to improve compliance with reporting guidelines in health research.

scholarly journals Screening Older Adult Men for Abdominal Aortic Aneurysm: A Scoping Review

2021 ◽  
Vol 15 (2) ◽  
pp. 155798832110012
Author(s):  
Priya Bains ◽  
John L. Oliffe ◽  
Martha H. Mackay ◽  
Mary T. Kelly
Keyword(s):  
Abdominal Aortic Aneurysm ◽  
Aortic Aneurysm ◽  
Older Adult ◽  
Scoping Review ◽  
Empirical Studies ◽  
Policy And Practice ◽  
Eligibility Criteria ◽  
Screening Guidelines ◽  
Adult Men ◽  
Abdominal Aortic

Abdominal aortic aneurysm (AAA) is a potentially fatal condition predominantly affecting older adult men (60 years or over). Based on evidence, preventative health-care guidelines recommend screening older males for AAA using ultrasound. In attempts to reduce AAA mortality among men, screening has been utilized for early detection in some Western countries including the UK and Sweden. The current scoping review includes 19 empirical studies focusing on AAA screening in men. The findings from these studies highlight benefits and potential harms of male AAA screening. The benefits of AAA screening for men include decreased incidence of AAA rupture, decreased AAA mortality, increased effectiveness of elective AAA repair surgery, and cost-effectiveness. The potential harms of AAA screening included lack of AAA mortality reduction, negative impacts on quality of life, and inconsistent screening eligibility criteria being applied by primary care practitioners. The current scoping review findings are discussed to suggest changes to AAA screening guidelines and improve policy and practice.

scholarly journals Scoping review on interventions to improve adherence to reporting guidelines in health research

BMJ Open ◽  
2019 ◽  
Vol 9 (5) ◽  
pp. e026589 ◽  
Author(s):  
David Blanco ◽  
Doug Altman ◽  
David Moher ◽  
Isabelle Boutron ◽  
Jamie J Kirkham ◽  
...  
Keyword(s):  
Scoping Review ◽  
Health Research ◽  
Search Strategy ◽  
Grey Literature ◽  
Biomedical Literature ◽  
Reporting Guidelines ◽  
Cochrane Library ◽  
Wide Range ◽  
Final Acceptance ◽  
Completeness Of Reporting

ObjectivesThe goal of this study is to identify, analyse and classify interventions to improve adherence to reporting guidelines in order to obtain a wide picture of how the problem of enhancing the completeness of reporting of biomedical literature has been tackled so far.DesignScoping review.Search strategyWe searched the MEDLINE, EMBASE and Cochrane Library databases and conducted a grey literature search for (1) studies evaluating interventions to improve adherence to reporting guidelines in health research and (2) other types of references describing interventions that have been performed or suggested but never evaluated. The characteristics and effect of the evaluated interventions were analysed. Moreover, we explored the rationale of the interventions identified and determined the existing gaps in research on the evaluation of interventions to improve adherence to reporting guidelines.Results109 references containing 31 interventions (11 evaluated) were included. These were grouped into five categories: (1) training on the use of reporting guidelines, (2) improving understanding, (3) encouraging adherence, (4) checking adherence and providing feedback, and (5) involvement of experts. Additionally, we identified lack of evaluated interventions (1) on training on the use of reporting guidelines and improving their understanding, (2) at early stages of research and (3) after the final acceptance of the manuscript.ConclusionsThis scoping review identified a wide range of strategies to improve adherence to reporting guidelines that can be taken by different stakeholders. Additional research is needed to assess the effectiveness of many of these interventions.

Using social media to engage knowledge users in health research priority-setting: a scoping review (Preprint)

2021 ◽  
Author(s):  
Surabhi Sivaratnam ◽  
Kyobin Hwang ◽  
Alyssandra Chee-A-Tow ◽  
Lily Ren ◽  
Geoffrey Fang ◽  
...  
Keyword(s):  
Social Media ◽  
Family Caregivers ◽  
Scoping Review ◽  
Priority Setting ◽  
Health Research ◽  
Cochrane Library ◽  
Snowball Sampling ◽  
Knowledge User ◽  
Research Priority ◽  
Health Research Priority Setting

BACKGROUND The importance of including knowledge users (patients, family caregivers, clinicians, other advocates) in health research priority-setting is becoming increasingly recognized. Social media-based methods represent one means to elicit and prioritize the research interests of knowledge users, but there remains sparse methodological guidance on how best to conduct social media efforts and assess their effectiveness. OBJECTIVE This scoping review aimed to identify studies that used social media methods to engage knowledge users in research priority-setting. We synthesized associated data to understand how the methods are being used, how method effectiveness is directly and indirectly measured, and benefits, limitations, and recommendations. METHODS We searched PubMed, EMBASE, Cochrane Library, Scopus, and Web of Science from database inception until June 2020. Two reviewers screened all titles and abstracts, as well as full-texts. We included all peer-reviewed studies that implemented and evaluated social media strategies aimed at engaging knowledge users in research priority-setting. We conducted a subsequent thematic analysis using NVivo 12 to aggregate study data into related codes and themes. RESULTS A total of 18 papers reporting on 17 unique studies were included. These studies utilized Facebook, Twitter, Reddit, websites, video-calling platforms, emails, blogs, e-newsletters, and online forums to engage with knowledge users. Priority-setting engagement strategies included paid platform-based advertisements, email-embedded survey links, and question-and-answer forums. Dissemination techniques for priority-setting surveys included snowball sampling, and the circulation of participation opportunities via internal members’ and external organizations’ social media platforms. Social media campaign effectiveness was directly assessed as number of clicks and impressions on posts, frequency of viewed posts, volume of comments and replies, number of times individuals searched for a campaign page, and number of times a hashtag was used; and indirectly assessed as the total number of survey responses and the number of visits to external survey administration sites. Included studies recommended the use of social media group moderators, opportunities for peer-to-peer interaction, and the establishment of a consistent tone and brand. CONCLUSIONS Social media may increase the speed and reach of knowledge user priority-setting participation opportunities leading to the development of research agendas informed by patient, family caregivers, clinicians, and other advocates. Perceived limitations of the approach include underrepresentation of certain groups and addressing these limitations will ensure the inclusion of research priority opinions of a broad knowledge user group.

scholarly journals Diverse Approaches to Creating and Using Causal Loop Diagrams in Public Health Research: Recommendations From a Scoping Review

2021 ◽  
Vol 42 ◽  
Author(s):  
Lori Baugh Littlejohns ◽  
Carly Hill ◽  
Cory Neudorf
Keyword(s):  
Public Health ◽  
Scoping Review ◽  
Health Research ◽  
Journal Article ◽  
Secondary Data ◽  
Group Processes ◽  
Public Health Research ◽  
Policy And Practice ◽  
Causal Loop ◽  
Causal Loop Diagrams

Objectives: Complex systems thinking methods are increasingly called for and used as analytical lenses in public health research. The use of qualitative system mapping and in particular, causal loop diagrams (CLDs) is described as one promising method or tool. To our knowledge there are no published literature reviews that synthesize public health research regarding how CLDs are created and used.Methods: We conducted a scoping review to address this gap in the public health literature. Inclusion criteria included: 1) focused on public health research, 2) peer reviewed journal article, 3) described and/or created a CLD, and 4) published in English from January 2018 to March 2021. Twenty-three articles were selected from the search strategy.Results: CLDs were described as a new tool and were based upon primary and secondary data, researcher driven and group processes, and numerous data analysis methods and frameworks. Intended uses of CLDs ranged from illustrating complexity to informing policy and practice.Conclusion: From our learnings we propose nine recommendations for building knowledge and skill in creating and using CLDs for future public health research.

scholarly journals Conceptualising, operationalising and measuring trust in participatory health research networks: a scoping review protocol

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e038840
Author(s):  
Meghan Gilfoyle ◽  
Anne MacFarlane ◽  
Jon Salsberg
Keyword(s):  
Social Networks ◽  
Scoping Review ◽  
Health Research ◽  
Grey Literature ◽  
Community Based Participatory Research ◽  
Community Health Services ◽  
Cochrane Library ◽  
Research Partnerships ◽  
Participatory Health Research ◽  
Review Protocol

IntroductionA participatory approach to co-creating new knowledge in health research has gained significant momentum in recent decades. This is founded on the described benefits of community-based participatory research (CBPR), such as increased relevance of research for those who must act on its findings. This has prompted researchers to better understand how CBPR functions to achieve these benefits through building sustainable research partnerships. Several studies have identified ‘trust’ as a key mechanism to achieve sustainable partnerships, which themselves constitute social networks. Although existing literature discuss trust and CBPR, or trust and social networks, preliminary searches reveal that none link all three concepts of trust, CBPR and social networks. Thus, we present our scoping review protocol to systematically review and synthesise the literature exploring how trust is conceptualised, operationalised and measured in CBPR and social networks.Methods and analysisThis protocol follows guidelines from Levac et al (Scoping studies: advancing themethodology. Implement Sci 2010;5:69), which follow the methodological framework of Arksey and O’Malley. This scoping review explores several electronic databases including Scopus, Medline, PubMed, Web of Science, CINAHL, Cochrane Library, Google Scholar and PsychINFO. Grey literature such as theses/dissertations and reports will be included. A search strategy was identified and agreed on by the team in conjunction with a research librarian. Two independent reviewers will screen articles by title and abstract, then by full text based on pre-determined exclusion/inclusion criteria. A third reviewer will arbitrate discrepancies regarding inclusions/exclusions. We plan to incorporate a thematic analysis.Ethics and disseminationEthics is not required for this review specifically. It is a component of a larger study that received ethical approval from the University of Limerick research ethics committee (#2018_05_12_EHS). Translation of results to key domains is integrated through active collaboration of stakeholders from community, health services and academic sectors. Findings will be disseminated through academic conferences, and peer review publications targeting public and patient involvement in health research.

scholarly journals Selection of theories, models and frameworks (TMFs) in the implementation of Healthy Eating Interventions in Centre-Based Childcare

2020 ◽  
Vol 79 (OCE2) ◽  
Author(s):  
Marjorie Lima do Vale ◽  
Anna Farmer ◽  
Geoff Ball ◽  
Rebecca Gokiert ◽  
Katerina Maximova ◽  
...  
Keyword(s):  
Healthy Eating ◽  
Scoping Review ◽  
Empirical Studies ◽  
Implementation Strategies ◽  
Cochrane Library ◽  
Food Environments ◽  
Eating Behaviours ◽  
Process Guidance ◽  
The Many ◽  
Selection Of

AbstractChildcare settings are ideal for health promotion; however, they may not provide food environments that support children's healthy eating behaviours. To address this problem, researchers and practitioners have designed interventions with the aid of Theories, Models and Frameworks (TMFs) with the aim to improve centre-based childcare food environments. Considering the many TMFs that exist, the question of which TMF to select remains a challenge. As such, one of the objectives of our scoping review was to explore the selection criteria used in studies that aimed to promote healthy eating in centre-based childcare.We utilized the scoping review steps outlined by Arksey & O'Malley (2005), and Levac, Colquhoun, & O'Brien (2012). We searched Medline, Embase, CINAHL, ERIC, PsycINFO, Scopus, CAB Abstracts, Agricola, ProQuest Dissertations and Theses, Prospero, and Cochrane library of SR for studies published from January 1990 to October 2018. We also consulted subject matter experts and hand searched reference lists. First level screening was completed by two reviewers (Kappa > 0.8). Second level was completed by one reviewer and questions were addressed through discussion with a second reviewer. TMF categorisation (i.e., individual, community, process and evaluation-focused) was informed by Nilsen (2015) and Rimer (2005). We used direct content analysis to organize the reported criteria used by authors to select TMFs. The rationales presented by authors were coded using Birken et al. (2017) criteria and definitions, which were based on seminal articles and an iterative consensus process. The categorization was completed by one reviewer (MV) and verified by a second reviewer (AF).We retained 38 studies and identified 28 TMFs. TMFs were used to design implementation strategies, steps and outcomes, identify implementation factors and stakeholders, explain findings, and provide recommendations. Of the total of 14 criteria for selecting TMFs identified, the most frequently used were for describing a change process (n = 12; 23%), providing process guidance (n = 8; 15%), and TMFs use in empirical studies (n = 7; 13%).TMF selection was most often based on descriptive rather than predictive or explanatory characteristics. Increasing childcare researchers’ and practitioners’ awareness of existing TMFs and tools to guide TMF selection might reduce selection based on convenience or where limited evidence for TMF effectiveness exist.

scholarly journals Dialysis decisions concerning cognitively impaired adults: a scoping literature review

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Jordan A. Parsons ◽  
Jonathan Ives
Keyword(s):  
Decision Making ◽  
Kidney Disease ◽  
Scoping Review ◽  
Cultural Sensitivity ◽  
Empirical Studies ◽  
The United States ◽  
Adult Patients ◽  
Cochrane Library ◽  
Cognitively Impaired ◽  
Decision Making Capacity

AbstractBackgroundChronic kidney disease is a significant cause of global deaths. Those who progress to end-stage kidney disease often commence dialysis as a life-extending treatment. For cognitively impaired patients, the decision as to whether they commence dialysis will fall to someone else. This scoping review was conducted to map existing literature pertaining to how decisions about dialysis are and should be made with, for, and on behalf of adult patients who lack decision-making capacity. In doing so, it forms the basis of a larger body of work that is exploring how these decisions ought to be made.MethodsTo identify relevant papers, searches were conducted on Ovid MEDLINE(R), Embase, PsychINFO, The Cochrane Library, and Web of Science. Inclusion criteria were then applied, requiring that papers: report on empirical studies about how decisions about dialysis are madeand/ordiscuss how decisions about dialysis should be made with, for, and on behalf of adult patients who lack decision-making capacity; be published from 1961 onwards; and be published in English. This resulted in 27 papers eligible for inclusion.ResultsOf note, the majority of papers originated in the United States. There was wide variation across the included papers. Extracted data were grouped under the following themes: involving various parties (patient involvement, family dominance, and wider communication); objectivity about care options (including difficulties with family detachment); cultural sensitivity; medical versus non-medical factors; managing nonadherent patients; and the role and prevalence of substituted judgement. The literature shows that there is inconsistency in the principles and processes surrounding decisions made about dialysis with, for, and on behalf of adult patients who lack decision-making capacity.ConclusionsThis scoping review demonstrates that there is significant variation in both the practice and theory of dialysis decision making with, for, and on behalf of cognitively impaired adult patients. Complexity arises in considering who should get a say, how influential their say should be in a decision, and what factors are most relevant to the decision. A lack of up-to-date literature exploring this issue is highlighted, with this scoping review providing a useful groundwork from which further research can be undertaken.

scholarly journals Obtaining and managing data sets for individual participant data meta-analysis: scoping review and practical guide

2019 ◽  
Author(s):  
Matthew Ventresca ◽  
Holger J Schünemann ◽  
Fergus Macbeth ◽  
Mike Clarke ◽  
Lehana Thabane ◽  
...  
Keyword(s):  
Data Sharing ◽  
Scoping Review ◽  
Data Retrieval ◽  
Current Data ◽  
Cochrane Library ◽  
European Federation ◽  
Individual Participant Data ◽  
Policy And Practice ◽  
Individual Participant ◽  
Pharmaceutical Industries

Abstract Background Shifts in data sharing policy have increased researchers’ access to individual participant data (IPD) from clinical studies. Simultaneously the number of IPD meta-analyses (IPDMAs) is increasing. However, rates of data retrieval have not improved. Our goal was to describe the challenges of retrieving IPD for an IPDMA and provide practical guidance based on a review of the literature and practical examples and observations. Methods We systematically searched MEDLINE, Embase, and the Cochrane Library to identify publications focused on strategies to obtain IPD. In addition, we searched pharmaceutical websites and contacted industry organizations for supplemental information pertaining to recent advances in industry policy and practice. Finally, we documented setbacks and solutions encountered while completing a comprehensive IPDMA and drew on previous experiences related to seeking and using IPD. Results Our scoping review identified 16 articles directly relevant for the conduct of IPDMAs. We present short descriptions of these articles alongside overviews of IPD sharing policies and procedures of pharmaceutical companies which display certification of Principles for Responsible Clinical Trial Data Sharing via Pharmaceutical Research and Manufacturers of America or European Federation of Pharmaceutical Industries and Associations websites. Advances in data sharing policy and practice affected the way in which data is requested, obtained, stored and analyzed For our IPDMA it took 6.5 years to collect and analyze relevant IPD and navigate additional administrative barriers. Delays in obtaining data were largely due to challenges in communication with study sponsors, frequent changes in data sharing policies of study sponsors, and the requirement for a diverse skillset related to research, administrative, statistical and legal issues. Conclusions Knowledge of current data sharing practices and platforms as well as anticipation of necessary tasks and potential obstacles may reduce time and resources required for an IPDMA. Sufficient project funding and timeline flexibility are pre-requisites for successful collection and analysis of IPD. IPDMA researchers must acknowledge the additional and unexpected responsibility they are placing on study authors or data sharing administrators and should offer assistance in readying data for sharing.

Sign in / Sign up

Export Citation Format

Share Document