Hidden concerns of sharing research data by low/middle-income country scientists.
Ontology highlight
ABSTRACT:
SUBMITTER: Bezuidenhout L
PROVIDER: S-EPMC5827722 | biostudies-literature | 2018
REPOSITORIES: biostudies-literature
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Project description:There is an abundance of free online tools accessible to scientists and others that can be used for online networking, data sharing and measuring research impact. Despite this, few scientists know how these tools can be used or fail to take advantage of using them as an integrated pipeline to raise awareness of their research outputs. In this article, the authors describe their experiences with these tools and how they can make best use of them to make their scientific research generally more accessible, extending its reach beyond their own direct networks, and communicating their ideas to new audiences. These efforts have the potential to drive science by sparking new collaborations and interdisciplinary research projects that may lead to future publications, funding and commercial opportunities. The intent of this article is to: describe some of these freely accessible networking tools and affiliated products; demonstrate from our own experiences how they can be utilized effectively; and, inspire their adoption by new users for the benefit of science.
| S-EPMC5580431 | biostudies-literature
Project description:The hemoglobinopathies, collectively, are cause for significant morbidity and mortality. Children are the most severely affected. Despite much of the genetics and biology of hemoglobinopathies being known for a long time, and being used successfully in some countries to systematically reduce burden of disease, many low and medium income countries remain practically untouched by recent developments in human genomics involving the systematic collection and sharing of variation data to fighting hemoglobinopathies (notably thalassaemias and sickle cell disease, but also G6PD). Commitment to systematic variant data collection is increasing, but this is occurring mostly in high-income countries where much of the diagnosis and testing takes place. There is a risk that countries with the highest burden of these diseases are being left behind in a form of “genomic divide”. Capacity to generate quality data on variants, to store this information so that it can be shared internationally, needs to be built in these countries. Tackling hemoglobinopathies is an ideal entry point for these countries to develop the necessary infrastructure and expertise that can expand into other areas of health. This genomic capacity will enable building: (I) the genetic evidence base for better management of delivery of local treatment, care and eventually even cure; (II) a foundation for genomic medicine by working with national, regional and local health care professionals to raise public awareness of the genetic basis of hemoglobinopathies. Global Globin 2020 Challenge has been initiated with two goals: (I) to see growth in the quality and quantity of curated inputs into internationally recognized genetic databases from low- and middle-income countries participating in the project, and to harmonize the sharing of all relevant variant data between countries in accordance with international best practice that integrates all the relevant ethical and regulatory frameworks and policies required to protect patients at the same time that the biotechnical procedures are developed; (II) to ensure that the storage, curation and sharing of the relevant DNA variation information is sustainable in the medium and longer term by expanding and strengthening the international network of professionals, including curators, researchers, clinicians, bioinformaticians, counsellors, patient groups and policymakers. Pursuit of these goals will raise the profile of genomic medicine in low and middle income countries in national, regional and international research organizations. It will also develop the capability of professionals required for diagnosing, treating and counseling carriers in low and middle income countries thus giving them a greater voice and profile among genomic researchers globally so they can actively participate in regional and international partnerships related to genomic research. Initially the GG2020 Challenge will focus on a group of countries that have already formed groups of the relevant professionals including: Belgium, China, Cyprus, Egypt, France, Malaysia, Mexico, Mozambique, Nigeria, South Africa, Venezuela, Vietnam, Portugal, and The Netherlands. Other countries are ready to be included as the project expands. HVP will utilize its relationship with both UNESCO and WHO to ensure that the necessary international standards and procedures are developed in a consultative and harmonized manner.
| S-EPMC4563380 | biostudies-other
Project description:BACKGROUND: Scientific research in the 21st century is more data intensive and collaborative than in the past. It is important to study the data practices of researchers--data accessibility, discovery, re-use, preservation and, particularly, data sharing. Data sharing is a valuable part of the scientific method allowing for verification of results and extending research from prior results. METHODOLOGY/PRINCIPAL FINDINGS: A total of 1329 scientists participated in this survey exploring current data sharing practices and perceptions of the barriers and enablers of data sharing. Scientists do not make their data electronically available to others for various reasons, including insufficient time and lack of funding. Most respondents are satisfied with their current processes for the initial and short-term parts of the data or research lifecycle (collecting their research data; searching for, describing or cataloging, analyzing, and short-term storage of their data) but are not satisfied with long-term data preservation. Many organizations do not provide support to their researchers for data management both in the short- and long-term. If certain conditions are met (such as formal citation and sharing reprints) respondents agree they are willing to share their data. There are also significant differences and approaches in data management practices based on primary funding agency, subject discipline, age, work focus, and world region. CONCLUSIONS/SIGNIFICANCE: Barriers to effective data sharing and preservation are deeply rooted in the practices and culture of the research process as well as the researchers themselves. New mandates for data management plans from NSF and other federal agencies and world-wide attention to the need to share and preserve data could lead to changes. Large scale programs, such as the NSF-sponsored DataNET (including projects like DataONE) will both bring attention and resources to the issue and make it easier for scientists to apply sound data management principles.
| S-EPMC3126798 | biostudies-literature
Project description:BackgroundStressful patient experiences during the intensive care unit (ICU) stay is associated with reduced satisfaction in High Income Countries (HICs) but has not been explored in Lower and Middle Income Countries (LMICs). This study describes the recalled experiences, stress and satisfaction as perceived by survivors of ICUs in a LMIC.MethodsThis follow-up study was carried out in 32 state ICUs in Sri Lanka between July and December 2015.ICU survivors' experiences, stress factors encountered and level of satisfaction were collected 30 days after ICU discharge by a telephone questionnaire adapted from Granja and Wright.ResultsOf 1665 eligible ICU survivors, 23.3% died after ICU discharge, 49.1% were uncontactable and 438 (26.3%) patients were included in the study. Whilst 78.1% (n = 349) of patients remembered their admission to the hospital, only 42.3% (n = 189) could recall their admission to the ICU. The most frequently reported stressful experiences were: being bedridden (34.2%), pain (34.0%), general discomfort (31.7%), daily needle punctures (32.9%), family worries (33.6%), fear of dying and uncertainty in the future (25.8%). The majority of patients (376, 84.12%) found the atmosphere of the ICU to be friendly and calm. Overall, the patients found the level of health care received in the ICU to be "very satisfactory" (93.8%, n = 411) with none of the survivors stating they were either "dissatisfied" or "very dissatisfied".ConclusionIn common with HIC, survivors were very satisfied with their ICU care. In contrast to HIC settings, specific ICU experiences were frequently not recalled, but those remembered were reported as relatively stress-free. Stressful experiences, in common with HIC, were most frequently related to uncertainty about the future, dependency, family, and economic concerns.
| S-EPMC5863441 | biostudies-literature
Project description:BackgroundRoutine health information systems (RHISs) support resource allocation and management decisions at all levels of the health system, as well as strategy development and policy-making in many low- and middle-income countries (LMICs). Although RHIS data represent a rich source of information, such data are currently underused for research purposes, largely due to concerns over data quality. Given that substantial investments have been made in strengthening RHISs in LMICs in recent years, and that there is a growing demand for more real-time data from researchers, this systematic review builds upon the existing literature to summarize the extent to which RHIS data have been used in peer-reviewed research publications.MethodsUsing terms 'routine health information system', 'health information system', or 'health management information system' and a list of LMICs, four electronic peer-review literature databases were searched from inception to February 202,019: PubMed, Scopus, EMBASE, and EconLit. Articles were assessed for inclusion based on pre-determined eligibility criteria and study characteristics were extracted from included articles using a piloted data extraction form.ResultsWe identified 132 studies that met our inclusion criteria, originating in 37 different countries. Overall, the majority of the studies identified were from Sub-Saharan Africa and were published within the last 5 years. Malaria and maternal health were the most commonly studied health conditions, although a number of other health conditions and health services were also explored.ConclusionsOur study identified an increasing use of RHIS data for research purposes, with many studies applying rigorous study designs and analytic methods to advance program evaluation, monitoring and assessing services, and epidemiological studies in LMICs. RHIS data represent an underused source of data and should be made more available and further embraced by the research community in LMIC health systems.
| S-EPMC7446185 | biostudies-literature
Project description:The Special Programme for Research and Training in Tropical Diseases (TDR) co-sponsored by UNICEF, UNDP, World Bank and WHO has been supporting research capacity strengthening in low- and middle-income countries for over 40 years. In order to assess and continuously optimize its capacity strengthening approaches, an evaluation of the influence of TDR training grants on research career development was undertaken. The assessment was part of a larger evaluation conducted by the European Science Foundation. A comprehensive survey questionnaire was developed and sent to a group of 117 trainees supported by TDR who had completed their degree (masters or PhD) between 2000 and 2012; of these, seventy seven (77) responded. Most of the respondents (80%) rated TDR support as a very important factor that influenced their professional career achievements. The "brain drain" phenomenon towards high-income countries was particularly low amongst TDR grantees: the rate of return to their region of origin upon completion of their degree was 96%. A vast majority of respondents are still working in research (89%), with 81% of respondents having participated in multidisciplinary research activities; women engaged in multidisciplinary collaboration to a higher extent than men. However, only a minority of all have engaged in intersectoral collaboration, an aspect that would require further study. The post-degree career choices made by the respondents were strongly influenced by academic considerations. At the time of the survey, 92% of all respondents hold full-time positions, mainly in the public sector. Almost 25% of the respondents reported that they had influenced policy and practice changes. Some of the challenges and opportunities faced by trainees at various stages of their research career have been identified. Modalities to overcome these will require further investigation. The survey evidenced how TDR's research capacity grant programmes made a difference on researchers' career development and on south-south collaborations, by strengthening and localizing research capacity in lower income regions, and also showed there is more that needs to be done. The factors involved, challenges and lessons learnt may help donors and policy makers improve their future interventions with regard to designing capacity strengthening programmes and setting funding priorities.
| S-EPMC5736233 | biostudies-literature
Project description:Globally, drug-resistant epilepsy affects one third of people living with epilepsy. With limitations in treatment options for refractory epilepsy in resource-limited regions, ketogenic diet therapy is an important option to consider. Utilizing the 2015 International League Against Epilepsy recommended minimum requirements for ketogenic diet therapy, three male children with refractory epilepsy, aged 2.5, 6.5 and 10?years, were initiated on the classical ketogenic diet using locally available food in August 2017 at University Teaching Hospitals-Children's Hospital in Lusaka, Zambia, through partnership with the Epilepsy Program at Boston Children's Hospital in the United States. Following successful initiation in all three children, the diet was discontinued in the 10-year-old due to difficulties complying with the diet. The youngest child demonstrated an over 50% seizure reduction and gained developmental milestones. The third child achieved seizure freedom and showed marked improvement in behaviour. This pilot demonstrates the feasibility of ketogenic diet as an important therapeutic option for refractory epilepsy in Zambia. Given the limitations in treatment choices and medication accessibility, dietary therapy offers an alternative management strategy in our setting. Collaboration with an established ketogenic diet centre contributes to a successful program.
| S-EPMC7393450 | biostudies-literature
Project description:Alternative clinical trial designs and methods are increasingly being used in place of the conventional individually randomised controlled trial (RCT) in high-income and in low-income and middle-income country (LMIC) research. These approaches - including adaptive, cluster-randomised and stepped-wedge designs and controlled human infection models - offer a number of potential advantages, including being more efficient and making the clinical trial process more socially acceptable. However, these designs and methods are generally not familiar to researchers, research ethics committees and regulators and their ethical implications have not received sufficient international attention from the bioethics, research, and policymaking communities working together. The ethics of alternative clinical trial designs and methods in LMIC research was chosen as a topic for the 2017 Global Forum on Bioethics in Research (GFBR). The meeting opened a global dialogue about this emerging issue in research ethics and gave voice to the LMIC perspective. It identified the need to take a multidisciplinary approach and to develop capacity amongst researchers and research ethics committees and regulators to propose, review and regulate these novel designs and methods. Building skills and infrastructure will empower researchers to choose from a broad range of designs and methods and adopt the most scientifically suitable, efficient, ethical and context-appropriate of these. The need for capacity development is most pressing from the LMIC perspective, where limited resources create an urgency to seek the most efficient trial design and method. The aim of this paper is to encourage broad debate about this complex area of research. By opening up this debate, GFBR aims to promote the appropriate and ethical use of novel designs and methods so their full potential to address the health needs in LMICs can be realised.
| S-EPMC6921436 | biostudies-literature
Project description:No studies have investigated the influence of ethnicity in a multi-ethnic middle-income country with a long-standing history of co-habitation. Stool samples from 214 Malaysian community members (46 Malay, 65 Chinese, 49 Indian, and 54 Jakun) were collected. The gut microbiota of the participants was investigated using 16S amplicon sequencing. Ethnicity exhibited the largest effect size across participants (PERMANOVA Pseudo-F = 4.24, R2 = 0.06, p = 0.001). Notably, the influence of ethnicity on the gut microbiota was retained even after controlling for all demographic, dietary factors and other covariates which were significantly associated with the gut microbiome (PERMANOVA Pseudo-F = 1.67, R2 = 0.02, p = 0.002). Our result suggested that lifestyle, dietary, and uncharacterized differences collectively drive the gut microbiota variation across ethnicity, making ethnicity a reliable proxy for both identified and unidentified lifestyle and dietary variation across ethnic groups from the same community.
| S-EPMC7846579 | biostudies-literature
Project description:Patient engagement in research is marked by partnership between clinicians, scientists, and people with lived experience of a disease, who jointly develop and implement research and disseminate results. Patient engagement in research has been shown to lead to more impactful and relevant findings. There is a global need for quality research contextualized for low- and middle-income countries (LMICs). Patient involvement in research could address this need, yet it remains a practice more commonly employed in high income countries. In this paper, the authors explore LMIC-specific challenges and opportunities for patient engagement in research. Limitations to patient engagement in research include gaps in health infrastructure, socioeconomic status, cultural stigma, and uncertain roles. Potential solutions to address these challenges include strategic national and international research partnerships, initiatives to combat stigma, and sensitization and training of stakeholders in patient engagement in research. Reflecting on their patient engagement experience with eye cancer research in Canada and Kenya, and supported by evidence of patient engagement in other low-resource settings, the authors provide a roadmap for patient engagement in research in LMICs.
| S-EPMC7196100 | biostudies-literature