scholarly journals Donors, authors, and owners: how is genomic citizen science addressing interests in research outputs?

2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Christi J. Guerrini ◽  
Meaganne Lewellyn ◽  
Mary A. Majumder ◽  
Meredith Trejo ◽  
Isabel Canfield ◽  
...  
Keyword(s):  
Citizen Science ◽  
Scientific Discovery ◽  
Grey Literature ◽  
Research Process ◽  
Inclusion Criteria ◽  
Biomedical Sciences ◽  
Human Genomics ◽  
Collection Form ◽  
And Control ◽  
Policies And Practices

Abstract Background Citizen science is increasingly prevalent in the biomedical sciences, including the field of human genomics. Genomic citizen science initiatives present new opportunities to engage individuals in scientific discovery, but they also are provoking new questions regarding who owns the outputs of the research, including intangible ideas and discoveries and tangible writings, tools, technologies, and products. The legal and ethical claims of participants to research outputs become stronger—and also more likely to conflict with those of institution-based researchers and other stakeholders—as participants become more involved, quantitatively and qualitatively, in the research process. It is not yet known, however, how genomic citizen science initiatives are managing the interests of their participants in accessing and controlling research outputs in practice. To help fill this gap, we conducted an in-depth review of relevant policies and practices of U.S.-based genomic citizen science initiatives. Methods We queried the peer-reviewed literature and grey literature to identify 22 genomic citizen science initiatives that satisfied six inclusion criteria. A data collection form was used to capture initiative features, policies, and practices relevant to participants’ access to and control over research outputs. Results This analysis revealed that the genomic citizen science landscape is diverse and includes many initiatives that do not have institutional affiliations. Two trends that are in apparent tension were identified: commercialization and operationalization of a philosophy of openness. While most initiatives supported participants’ access to research outputs, including datasets and published findings, none supported participants’ control over results via intellectual property, licensing, or commercialization rights. However, several initiatives disclaimed their own rights to profit from outputs. Conclusions There are opportunities for citizen science initiatives to incorporate more features that support participants’ access to and control over research outputs, consistent with their specific objectives, operations, and technical capabilities.

scholarly journals Credit for and Control of Research Outputs in Genomic Citizen Science

2020 ◽  
Vol 21 (1) ◽  
pp. 465-489
Author(s):  
Christi J. Guerrini ◽  
Jorge L. Contreras
Keyword(s):  
Citizen Science ◽  
Scientific Discovery ◽  
Personal Data ◽  
Genetic Data ◽  
Biomedical Sciences ◽  
Research Subjects ◽  
Human Genomics ◽  
The Public ◽  
Legal Foundations ◽  
And Control

Citizen science encompasses activities with scientific objectives in which members of the public participate as more than passive research subjects from whom personal data or biospecimens are collected and analyzed by others. Citizen science is increasingly common in the biomedical sciences, including the fields of genetics and human genomics. Genomic citizen science initiatives are diverse and involve citizen scientists in collecting genetic data, solving genetic puzzles, and conducting experiments in community laboratories. At the same time that genomic citizen science is presenting new opportunities for individuals to participate in scientific discovery, it is also challenging norms regarding the manner in which scientific research outputs are managed. In this review, we present a typology of genomic citizen science initiatives, describe ethical and legal foundations for recognizing genomic citizen scientists’ claims of credit for and control of research outputs, and detail how such claims are or might be addressed in practice across a variety of initiatives.

scholarly journals Towards a Transdisciplinary Theoretical Framework of Citizen Science: Results from a Meta-Review Analysis

2021 ◽  
Vol 13 (14) ◽  
pp. 7904
Author(s):  
Andrea Spasiano ◽  
Salvatore Grimaldi ◽  
Alessio Maria Braccini ◽  
Fernando Nardi
Keyword(s):  
Citizen Science ◽  
Information Technologies ◽  
Research Process ◽  
Theoretical Framework ◽  
Organizational Studies ◽  
Digital Platforms ◽  
Social Challenges ◽  
Review Analysis ◽  
Meta Review ◽  
Application Fields

This work intends to lay the foundations for a theoretical framework of citizen science combining social and organizational implications with the support of information technologies. The proposed theoretical framework moves towards a shared and common research process between experts and citizens to deal with environmental and social challenges. The role and capacity of online communities is explored and their engagement capacity by means of web-based digital platforms supporting crowdsourcing activities. In this contribution, authors highlight the most common practices, methods and issues of citizen science approaches adopted from multidisciplinary application fields to obtain insights for designing a new participative approach for organizational studies. To reach this goal, authors illustrate the results of a systematic meta-review analysis, consisting of an accurate selection and revision of journal review articles in order to highlight concepts, methods, research design approaches and tools adopted in citizen science approaches.

Interventions to optimise medication prescribing and adherence in older people with cancer: A systematic scoping review

2021 ◽  
Vol 29 (Supplement_1) ◽  
pp. i23-i24
Author(s):  
M Murphy ◽  
K Bennett ◽  
S Ryan ◽  
C Hughes ◽  
A Lavan ◽  
...  
Keyword(s):  
Older Adults ◽  
Scoping Review ◽  
Grey Literature ◽  
Intervention Development ◽  
Control Group ◽  
Sample Population ◽  
Inclusion Criteria ◽  
Scoping Reviews ◽  
Medication Prescribing ◽  
Broad Overview

Abstract Introduction Older adults with cancer often require multiple medications (polypharmacy) comprising cancer-specific treatments, supportive care medications (e.g. analgesics) and medications for pre-existing conditions. The reported prevalence of polypharmacy in older adults with cancer ranges from 13–92% (1). Increasing numbers of medications pose risks of potentially inappropriate prescribing and medication non-adherence. Aim The aim of this scoping review was to provide an overview of evaluations of interventions to optimise medication prescribing and/or adherence in older adults with cancer, with a particular focus on the interventions, study populations and outcome measures that have been assessed in previous evaluations. Methods Four databases (PubMed, EMBASE, CINAHL, PsycINFO) were searched from inception to 29th November 2019 using relevant search terms (e.g. cancer, older adults, prescribing, adherence). Eligible studies evaluated interventions seeking to improve medication prescribing and/or adherence in older adults (≥65 years) with an active cancer diagnosis using a comparative evaluation (e.g. inclusion of a control group). All outcomes for studies that met inclusion criteria were included in the review. Two reviewers independently screened relevant abstracts for inclusion and performed data extraction. As a scoping review aims to provide a broad overview of existing literature, formal assessments of methodological quality of included studies were not undertaken. Extracted data were collated using tables and accompanying narrative descriptive summaries. The review was reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR) guidelines (2). Results The electronic searches yielded 21,136 citations (Figure 1). Nine studies met inclusion criteria. Included studies consisted of five randomised controlled trials (RCTs), including one cluster RCT, and four before-and-after study designs. Studies were primarily conducted in oncology clinics, ranging from single study sites to 109 oncology clinics. Sample sizes ranged from 33 to 4844 patients. All studies had a sample population with a mean/median age of ≥65 years, however, only two studies focused specifically on older populations. Interventions most commonly involved patient education (n=6), and were delivered by pharmacists or nurses. Five studies referred to the intervention development process and no studies reported any theoretical underpinning. Three studies reported on prescribing-related outcomes and seven studies reported on adherence-related outcomes, using different terminology and a range of assessments. Prescribing-related outcomes comprised assessments of medication appropriateness (using Beers criteria), drug-related problems and drug interactions. Adherence-related outcomes included assessments of self-reported medication adherence and calculation of patients’ medication possession ratio. Conclusion The main strength of this scoping review is that it provides a broad overview of the existing literature on interventions aimed at optimising medication prescribing and adherence in older adults with cancer. The review highlights a lack of robust studies specifically targeting this patient population and limited scope to pool outcome data across included studies. Limitations of the review were that searches were restricted to English language publications and no grey literature was searched. Future research should focus specifically on older patients with cancer, and exercise rigour during intervention development, evaluation and reporting in order to generate findings that could inform future practice. References 1. Maggiore RJ, Gross CP, Hurria A. Polypharmacy in older adults with cancer. The oncologist. 2010;15(5):507–22. 2. Tricco AC, Lillie E, Zarin W, O'Brien KK, Colquhoun H, Levac D, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann Intern Med. 2018;169(7):467–73.

scholarly journals LO84: The incidence of fall-related intracranial bleeding in older adults taking anticoagulants, antiplatelets and neither medication: a meta-analysis

CJEM ◽  
2020 ◽  
Vol 22 (S1) ◽  
pp. S38-S38
Author(s):  
K. de Wit ◽  
D. Nishijima ◽  
S. Mason ◽  
R. Jeanmonod ◽  
S. Parpia ◽  
...  
Keyword(s):  
Older Adults ◽  
Meta Analysis ◽  
Grey Literature ◽  
Random Effect ◽  
Intracranial Bleeding ◽  
Inclusion Criteria ◽  
Antiplatelet Medication ◽  
Cochrane Database ◽  
Random Effect Models ◽  
Anticoagulant Medication

Introduction: It is unclear whether anticoagulant or antiplatelet medications increase the risk for intracranial bleeding in older adults after a fall. Our aim was to report the incidence of intracranial bleeding among older adults presenting to the emergency department (ED) with a fall, among patients taking anticoagulants, antiplatelet medications, both medications and neither medication. Methods: This was a systematic review and meta-analysis, PROSPERO reference CRD42019122626. Medline, EMBASE (via OVID 1946 - July 2019), Cochrane, Database of Abstracts of Reviews of Effects databases and the grey literature were searched for studies reporting on older adults who were evaluated after a fall. We included prospective studies conducted in the ED where more than 80% of the cohort were 65 years or older and had fallen. We contacted study authors for aggregate data on intracranial bleeding in patients prescribed anticoagulant medication, antiplatelet medication and neither medication. Incidences of intracranial bleeding were pooled using random effect models, and I2 index was used to assess heterogeneity. Results: From 7,240 publication titles, 10 studies met inclusion criteria. The authors of 8 of these 10 studies provided data (on 9,489 patients). All studies scored low or moderate risk of bias. The pooled incidence of intracranial bleeding among patients taking an anticoagulant medication was 5.1% (n = 5,016, 95% Confidence Interval (CI): 4.1 to 6.3%) I2 = 42%, a single antiplatelet 6.4% (n = 2,148, 95% CI: 5.4 to 7.6%) I2 = 75%, both anticoagulant and antiplatelet medications 5.9% (n = 212, 95% CI: 1.3 to 13.5%) I2 = 72%, and neither of these medications 4.8% (n = 1,927, 95% CI: 3.5 to 6.2%) I2 = 50%. A sensitivity analysis restricted to patients who had a head CT in the ED reported incidences of 6.1% (n = 3,561, 95% CI: 3 to 8.3%), 8.4% (n = 1,781, 95% CI: 5.5 to 11.8%), 6.7% (n = 206, 95% CI 1.5 to 15.2%) and 6.6% (n = 1,310, 95% CI: 5.0 to 8.4%) respectively. Conclusion: The incidence of fall-related intracranial bleeding in older ED patients was similar among patients who take anticoagulant medication, antiplatelet medication, both and neither medication, although there was heterogeneity between study findings.

scholarly journals TraceTogether: Pandemic Response, Democracy, and Technology

2020 ◽  
Vol 14 (3) ◽  
pp. 523-532 ◽  
Author(s):  
Hallam Stevens ◽  
Monamie Bhadra Haines
Keyword(s):  
Citizen Science ◽  
Social Trust ◽  
Public Support ◽  
Contact Tracing ◽  
Democratic Participation ◽  
Government Power ◽  
Power And Control ◽  
Close Proximity ◽  
Pandemic Response ◽  
And Control

Abstract On 20 March 2020, in the midst of the COVID-19 pandemic, the Singapore government released a new app called TraceTogether. Developed by the Ministry of Health, SG United, and GovTech Singapore, the app uses the Bluetooth capability of smartphones to store information about other smartphones that have come into close proximity with your own. These data facilitate the government’s process of “contact tracing” through which they track those who have potentially come into contact with the virus and place them in quarantine. This essay attempts to understand what kinds of citizens and civic behavior might be brought into being by this technology. By examining the workings and affordances of the TraceTogether app in detail, the authors argue that its peer-to-peer and open-source technology features mobilize the rhetorics and ideals of citizens science and democratic participation. However, by deploying these within a context that centralizes data, the app turns ideals born of dissent and protest on their head, using them to build trust not within a community but rather in government power and control. Rather than building social trust, TraceTogether becomes a technological substitute for it. The significant public support for TraceTogether shows both the possibilities and limitations of citizen science in less liberal political contexts and circumstances.

scholarly journals Regreso a la presencialidad en el sector educación posterior al confinamiento, ¿es seguro volver? Una revisión sistemática rápida de la literatura Returning to Presence in the Post-Confinement Education Sector, Is It Safe to Return? A Rapid Systematic Review of the Literature

2021 ◽  
Author(s):  
Marieta Gómez Montero ◽  
Gabriela Gómez Gómez1 ◽  
Luisa López-Sarasty ◽  
Valentina Moncada Cortes ◽  
Francisco Palencia-Sánchez
Keyword(s):  
Systematic Review ◽  
Negative Impact ◽  
Grey Literature ◽  
Virtual Education ◽  
Educational Institutions ◽  
Evidence Based ◽  
Review Of The Literature ◽  
Inclusion Criteria ◽  
Revisión Sistemática ◽  
Social Abilities

Objective: The purpose of this review is to collect and synthesize the information available about the strategies and recommendations established around the world, to guarantee the reopening of educational institutions, in a safe manner, in the context of the COVID-19 pandemic. In addition, it seeks to propose evidence-based recommendations, which allow the safe reopening of educational institutions in Colombia. Methods: A systematic review of the literature was carried out in databases such as Embase, Scopus, and Web of Science, as well as research in grey literature, social media, Google, and Google Scholar. In order to do this, a search equation was proposed, and subsequently, 19 articles were chosen, which met the determined inclusion criteria. Results: According to the analyzed literature, the recommendations come to light in order to guarantee a safe return. Conclusions: The COVID-19 pandemic, has caused an impact in all spheres of society, being the education, one of the most affected, because it has had a negative impact on the development of cognitive and social abilities, in particular, in the new generations, as a result of social distancing and the change of modality to remote and/or virtual education. For this reason, it is considered a priority the reopening educational institutions, in a safe manner, considering the evidence-based recommendations.

scholarly journals Citizen Science in Human Medicine and the Use of Software-Systems: A Rapid Scoping Review

2021 ◽  
Author(s):  
Jannik Schaaf ◽  
Michaela Neff ◽  
Joerg Scheidt ◽  
Michael Steglich ◽  
Holger Storf
Keyword(s):  
Citizen Science ◽  
Rare Diseases ◽  
Scoping Review ◽  
Genetic Research ◽  
Research Process ◽  
Human Medicine ◽  
Software Systems ◽  
Ministry Of Education ◽  
Research Areas ◽  
Science Projects

Citizen science allows involving interested citizen in the entire research process in science. In the past, various citizen science projects have been performed in different research fields, especially in human medicine. We conducted a rapid scoping review to determine which citizen projects in human medicine already used software-based systems to engage citizens in the research process. Furthermore, we analysed which of the software-systems are publicly available, especially in the field of rare diseases, how citizens can participate using those tools and whether the usability was rated by the participants. To get insights for our project “SelEe (Seltene Erkrankungen bürgerwissenschaftlich erforschen)”, which is a citizen science project in rare diseases funded by the Federal Ministry of Education and Research (BMBF), we aimed to identify projects in this research area. We searched PubMed for articles between 2011 and 2021 and performed a title- and abstract screening, as well as a full-text screening. Finally, 12 studies were identified in different research areas like public health, genetic research and infectious diseases. We could not identify any study directly associated with rare diseases. None of the studies investigated usability of those systems. Furthermore, five publicly available citizen science software-systems were identified. Three of them are general systems that allow creating, operating, managing citizen science projects and including citizens in the research process. In further investigations, we will check and compare these systems, if they are appropriate for use in our SelEe-project.

scholarly journals Design and Control Issues in Qualitative Case Study Research

2003 ◽  
Vol 2 (2) ◽  
pp. 33-42 ◽  
Author(s):  
Gaynor Lloyd-Jones
Keyword(s):  
Qualitative Research ◽  
Design Theory ◽  
Qualitative Case Study ◽  
Case Study Research ◽  
Research Process ◽  
Theory Testing ◽  
Study Research ◽  
And Control ◽  
Dual Case

Some methodologists have pointed to similarities between experimental method and case study research in terms of design, theory testing and development. However, little is known about how these debates inform qualitative research rationales. The use of a sequential dual case study provided an opportunity to examine these issues and their impact on the unfolding research process. The interplay of inductive and deductive approaches was evident throughout in decisions determining the nature of the research enquiry.

From nowhere to nowhere. Homelessness and incarceration: a systematic review and meta-analysis

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Ahmad Y. Bashir ◽  
Noreen Moloney ◽  
Musaab E. Elzain ◽  
Isabelle Delaunois ◽  
Ali Sheikhi ◽  
...  
Keyword(s):  
Systematic Review ◽  
Meta Analysis ◽  
Grey Literature ◽  
Mental Illnesses ◽  
Significant Heterogeneity ◽  
Inclusion Criteria ◽  
Systematic Review Methodology ◽  
Content Type ◽  
Targeted Interventions ◽  
The Usa

Purpose This study aims to review international literature systematically to estimate the prevalence of homelessness among incarcerated persons at the time of imprisonment and the time of discharge. Design/methodology/approach A systematic review methodology was used to identify quantitative observational studies that looked at the prevalence of homelessness at the time of imprisonment, or up to 30 days prior to that point (initial homelessness), and at the time of discharge from prisons. Studies reported in English from inception to 11 September 2019 were searched for using eight databases (PsycInfo, Medline, Embase, CINAHL, PsycArticles, Scopus, Web of Science and the Campbell Collaboration), in addition to grey literature. Studies were screened independently by three researchers. Results of studies meeting inclusion criteria were meta-analysed using a random effects model to generate pooled prevalence data. Findings A total of 18 out of 2,131 studies met the inclusion criteria. All studies originated from the USA, Canada, UK, Ireland or Australia. The estimated prevalence of initial homelessness was 23.41% and at time of discharge was 29.94%. Substantial heterogeneity was observed among studies. Originality/value People in prisons are over twenty times more likely to be homeless than those in the general population. This is likely attributable to a range of health and social factors. Studies in this analysis suggest higher rates of homelessness in minority populations and among those with mental illnesses and neurodevelopmental disorders. While there was significant heterogeneity among studies, the results highlight the global burden of this issue and a clear necessity for targeted interventions to address homelessness in this population.

scholarly journals Educational Resources and Curriculum on Lactation for Health Undergraduate Students: A Scoping Review

2020 ◽  
pp. 089033442098069
Author(s):  
Suzanne Hetzel Campbell ◽  
Nicole de Oliveira Bernardes ◽  
Thayanthini Tharmaratnam ◽  
Flaviana Vely Mendonça Vieira
Keyword(s):  
Health Care ◽  
Health Professional ◽  
Scoping Review ◽  
Professional Education ◽  
Health Care Professionals ◽  
Grey Literature ◽  
Educational Resources ◽  
Inclusion Criteria ◽  
Breastfeeding Support ◽  
Support Skills

Background Breastfeeding is a fundamental component of health care, and health professionals need to be adequately prepared. As part of the system, health care professionals have the ability to influence the establishment and maintenance of breastfeeding. The global literature regarding the curricular approach or established best practices for health professional education in lactation is inconclusive and lacking in rigor. Research aim To explore the literature for the educational resources, methods, and curriculum used in the education of undergraduate health students related to lactation. Methods A scoping review examining the curricular programs of health professional students in lactation was undertaken exploring and summarizing evidence from peer reviewed and grey literature. A scoping review with a five-stage review process was followed. The database search between 1982–2018 generated 625 results, 79 full-text articles were reviewed, and 29 articles published in English met the inclusion criteria. Results In general, educational resources, methods, curricular approaches, and foundational topics were based on best practice standards. Some authors incorporated a variety of learning methods and provided experiential learning, with evidence of translation of knowledge into clinical practice. In the studies examined, researchers reported that students had improved their: knowledge and attitudes (59%); breastfeeding support skills (45%); and confidence (10%). However, even in programs that focused on developing students’ breastfeeding support skills, authors reported a lack of change in students’ confidence. Conclusions Although only English articles met the inclusion criteria, this review was unique in its search of multidisciplinary, multilingual, and international studies. Consistency in teaching across disciplines is key and not evident in the studies reviewed.

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