How and why should we engage parents as co-researchers in health research? A scoping review of current practices

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.

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Five Approaches to Qualitative Comparison Groups in Health Research: A Scoping Review

Qualitative Health Research ◽

10.1177/1049732318807208 ◽

2018 ◽

Vol 29 (3) ◽

pp. 455-468 ◽

Cited By ~ 5

Author(s):

Sally Lindsay

Keyword(s):

Scoping Review ◽

Health Research ◽

Lessons Learned ◽

Qualitative Comparison ◽

Qualitative Health Research ◽

Different Types ◽

Comparison Groups

Qualitative researchers have much to gain by using comparison groups. Although their use within qualitative health research is increasing, the guidelines surrounding them are lacking. The purpose of this article is to explore the extent to which qualitative comparison groups are being used within health research and to outline the lessons learned in using this type of methodology. Through conducting a scoping review, 31 articles were identified that demonstrated five different types of qualitative comparison groups. I highlight the key benefits and challenges in using this approach.

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The Use Of Social Media For Health Research Purposes: Scoping Review (Preprint)

10.2196/preprints.25736 ◽

2020 ◽

Author(s):

Charline Bour ◽

Susanne Schmitz ◽

Adrian Ahne ◽

Camille Perchoux ◽

Coralie Dessenne ◽

...

Keyword(s):

Social Media ◽

Scoping Review ◽

Health Research ◽

Ethical Issues ◽

Search Strategies ◽

Annual Growth Rate ◽

Ethical Perspective ◽

Evidence Map ◽

The Usa ◽

Use Of Social Media

BACKGROUND As social media are increasingly used worldwide, more and more scientists are relying on them for their health-related projects. But so far, social media features, methodologies and ethical issues are unclear with no overview of this relatively young field of research. OBJECTIVE This scoping review aimed to provide an evidence map of the different uses of social media for health research purposes, their fields of applications and their analysis methods. METHODS We followed the scoping review methodologies developed by Arksey and O’Malley and the Joanna Briggs Institute. After developing search strategies based on keywords (e.g., Social media, health research), comprehensive searches were conducted in Pubmed/MEDLINE and Web of Science databases. We limited the search strategies to documents written in English and published between 2005/01/01 and 2020/04/09. After removing duplicates, articles were screened at title/abstract and at full text level by two independent reviewers. One reviewer extracted data that were descriptively analyzed to map the available evidence. RESULTS After screening 1237 titles and abstracts and 407 full-texts, 268 unique papers were included, dating from 2009 to 2020 with an average annual growth rate of 32.71% for the 2009-2019 period. Studies mainly came from America (64.55%, N=173/268, including 151 from the USA). Articles used machine learning or data mining techniques (N=60/268) to analyze the data, discussed opportunities and limitations of the use of social media for research (N=59/268), assessed the feasibility of recruitment strategies (N=45/268) or discussed ethical issues (N=16/268). Communicable (e.g., influenza, N=122/268) and then chronic (e.g., cancer, N=40/268) diseases were the two main areas of interest. CONCLUSIONS Since their early days, social media have been recognized as a resource of high potential for health research purposes but yet the field is still suffering from a strong heterogeneity in the methodologies used, which prevents the research from comparison and generalisability. For the field to be fully recognized as a valid, complementary approach to more traditional health research study designs, there is now a need for more guidance by types of applications of social media for health research, both from a methodological and an ethical perspective.

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Exploring the State of Gender-Centered Health Research in the Context of Refugee Resettlement in Canada: A Scoping Review

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph17207511 ◽

2020 ◽

Vol 17 (20) ◽

pp. 7511

Author(s):

Chloe Zivot ◽

Cate Dewey ◽

Cole Heasley ◽

Sharada Srinivasan ◽

Matthew Little

Keyword(s):

Mental Health ◽

Gender Roles ◽

Social Services ◽

Scoping Review ◽

Health Research ◽

Emotional Health ◽

Gender Based Violence ◽

Health Seeking ◽

Social And Emotional ◽

Refugee Women

Interdisciplinary health research that investigates gender as a relational process is necessary to facilitate a safe and healthy resettlement process for refugees in Canada. This scoping review explores the range, nature, and extent of published research examining gender in relation to refugee health during resettlement in Canada. An initial search of six databases yielded 7325 articles published before June 2019. A total of 34 articles published between 1988 and 2019 were included for in-depth review. Articles meeting inclusion criteria primarily focused on refugee women. Categories of focus included maternal health, social and emotional health, health impacts of sexual and gender-based violence and torture, access to health and social services, decision-making and health-seeking behavior, mental health, and sexual and reproductive health. Our thematic analysis identified connections between gender roles, expectations, ideals, and health through interactions and lived experiences within the family, community, and healthcare system. Review findings suggest that many refugee women are influenced by pervasive gender roles and expectations as well as exposed to gendered health systems and practices that may pose risks to health, particularly mental health and access to services. Further efforts should be made to understand processes and experiences of resilience and community building in countering negative impacts of gendered beliefs and practices on health during resettlement.

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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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Global evidence of gender inequity in academic health research: a living scoping review protocol

JBI Evidence Synthesis ◽

10.11124/jbies-20-00078 ◽

2020 ◽

Vol 18 (10) ◽

pp. 2181-2193 ◽

Cited By ~ 1

Author(s):

Andrea C. Tricco ◽

Chantelle C. Lachance ◽

Patricia Rios ◽

Nazia Darvesh ◽

Jesmin Antony ◽

...

Keyword(s):

Scoping Review ◽

Health Research ◽

Academic Health ◽

Gender Inequity ◽

Review Protocol ◽

Global Evidence

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

BMJ Open ◽

10.1136/bmjopen-2017-017551 ◽

2017 ◽

Vol 7 (11) ◽

pp. e017551 ◽

Cited By ~ 6

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.

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Incorporating and evaluating citizen engagement in health research: a scoping review protocol

Systematic Reviews ◽

10.1186/s13643-021-01812-4 ◽

2021 ◽

Vol 10 (1) ◽

Author(s):

Anmol Shahid ◽

Brianna K. Rosgen ◽

Karla D. Krewulak ◽

Diane L. Lorenzetti ◽

Nadine Foster ◽

...

Keyword(s):

Scoping Review ◽

Health Research ◽

Open Science ◽

Citizen Engagement ◽

Implementation Evaluation ◽

Scoping Reviews ◽

Meaningful Engagement ◽

Review Protocol ◽

Planning Decision ◽

Science Framework

Abstract Background Citizen engagement in research is an emerging practice that involves members of the general public in research processes such as priority setting, planning, decision-making, research conduct, implementation, evaluation, and dissemination. Engaging citizens in research, particularly health research, increases the relevance of study findings, minimizes waste by facilitating stewardship over resources, and builds public trust in the research. While several existing frameworks guide the application of citizen engagement principles to health research, it is unclear how citizen engagement can be utilized to maximize benefits and minimize risks and challenges in health research. To address the gaps in knowledge around citizen engagement in health research, we propose a scoping review to synthesize the state of knowledge on methods to incorporate and evaluate citizen engagement in research. A protocol is presented in this manuscript. Methods The methodology for our scoping review is guided by Arksey and O’ Malley’s framework for scoping reviews, and additional recommendations by Levac and colleagues. We will include peer-reviewed and gray literature that report on citizen engagement in health research (including biomedical, clinical, health systems and services, and social, cultural, environmental and population health) and report method(s) to conduct, measure, or evaluate citizen engagement. We will systematically search electronic databases (MEDLINE, EMBASE, CINAHL, JSTOR, PsycINFO, Scopus, and Science Direct) from inception onwards and search relevant organizations’ websites for additional studies, frameworks, and reports on citizen engagement. Title and abstract and full-text citations will be screened independently and in duplicate. Data will be extracted independently and in duplicate, including document characteristics, citizen engagement definitions and goals, and outcomes of citizen engagement (e.g., barriers, facilitators). Discussion This review will synthesize the definitions, goals, methods, outcomes, and significance of citizen engagement in health research, as well as any potential barriers, facilitators, and challenges outlined in existing literature. The findings will provide an evidence-based foundation for developing new or improved guidance for citizen engagement in health research. Overall, we anticipate that our scoping review will be a preliminary step to meaningful engagement of citizens in research and strengthen the relationship between the scientific community and the public through transparency and collaboration. Systematic review registration Open Science Framework https://osf.io/hzcbr.

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