Data sharing: reaching consensus
In: Bulletin of the World Health Organization: the international journal of public health = Bulletin de l'Organisation Mondiale de la Santé, Band 88, Heft 6, S. 468-468
ISSN: 1564-0604
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In: Bulletin of the World Health Organization: the international journal of public health = Bulletin de l'Organisation Mondiale de la Santé, Band 88, Heft 6, S. 468-468
ISSN: 1564-0604
In: Bulletin of the World Health Organization: the international journal of public health, Band 82, Heft 6
ISSN: 0042-9686, 0366-4996, 0510-8659
In: The Journal of sex research, Band 49, Heft 1, S. 88-102
ISSN: 1559-8519
In: The Journal of sex research, Band 47, Heft 5, S. 490-503
ISSN: 1559-8519
During the Ebola outbreak in 2014-2015 in Sierra Leone, residual clinical specimens and accompanying data were collected from routine diagnostic testing in Public Health England (PHE) led laboratories. Most of the samples with all the accompanying data were transferred to PHE laboratories in the UK for curation by PHE. The remainder have been kept securely in Sierra Leone. The biobank holds approximately 9955 samples of which 1108 tested positive for Ebola virus. Researchers from the UK and overseas, from academia, government other research organisations and commercial companies can submit proposals to the biobank to access and use the samples. The Ministry of Health and Sanitation in Sierra Leone (MOHS) retains ownership of the data and materials and is working with PHE and other researchers to develop and conduct a series of research projects that will inform future healthcare and public health strategies relating to Ebola. The Ebola Biobank Governance Group (EBGG) was established to guarantee equality of access to the biobank for the most scientifically valuable research including by researchers from low and middle-income countries. Ensuring benefit to the people of Sierra Leone is an over-arching principle for decisions of the EBGG. Four ongoing research collaborations are based on the first wave of biobank proposals approved by EBGG. Whilst the biobank is a valuable resource its completeness and sample quality are consistent with the outbreak conditions under which they were collected.
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During the Ebola outbreak in 2014-2015 in Sierra Leone, residual clinical specimens and accompanying data were collected from routine diagnostic testing in Public Health England (PHE) led laboratories. Most of the samples with all the accompanying data were transferred to PHE laboratories in the UK for curation by PHE. The remainder have been kept securely in Sierra Leone. The biobank holds approximately 9955 samples of which 1108 tested positive for Ebola virus. Researchers from the UK and overseas, from academia, government other research organisations and commercial companies can submit proposals to the biobank to access and use the samples. The Ministry of Health and Sanitation in Sierra Leone (MOHS) retains ownership of the data and materials and is working with PHE and other researchers to develop and conduct a series of research projects that will inform future healthcare and public health strategies relating to Ebola. The Ebola Biobank Governance Group (EBGG) was established to guarantee equality of access to the biobank for the most scientifically valuable research including by researchers from low and middle-income countries. Ensuring benefit to the people of Sierra Leone is an over-arching principle for decisions of the EBGG. Four ongoing research collaborations are based on the first wave of biobank proposals approved by EBGG. Whilst the biobank is a valuable resource its completeness and sample quality are consistent with the outbreak conditions under which they were collected.
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Increasing the use of evidence in policy making means strengthening capacity on both the supply and demand sides of evidence production. However, little experience of strengthening the capacity of policy makers in low- and middle- income countries has been published to date. We describe the experiences of five projects (in Bangladesh, Gambia, India and Nigeria), where collaborative teams of researchers and policy makers/policy influencers worked to strengthen policy maker capacity to increase the use of evidence in policy. Activities were focused on three (interlinked) levels of capacity building: individual, organizational and, occasionally, institutional. Interventions included increasing access to research/data, promoting frequent interactions between researchers and members of the policy communities, and increasing the receptivity towards research/data in policy making or policy-implementing organizations. Teams were successful in building the capacity of individuals to access, understand and use evidence/data. Strengthening organizational capacity generally involved support to infrastructure (e.g. through information technology resources) and was also deemed to be successful. There was less appetite to address the need to strengthen institutional capacity-although this was acknowledged to be fundamental to promoting sustainable use of evidence, it was also recognized as requiring resources, legitimacy and regulatory support from policy makers. Evaluation across the three spheres of capacity building was made more challenging by the lack of agreed upon evaluation frameworks. In this article, we propose a new framework for assessing the impact of capacity strengthening activities to promote the use of evidence/data in policy making. Our evaluation concluded that strengthening the capacity of individuals and organizations is an important but likely insufficient step in ensuring the use of evidence/data in policy-cycles. Sustainability of evidence-informed policy making requires strengthening institutional capacity, as well as understanding and addressing the political environment, and particularly the incentives facing policy makers that supports the use of evidence in policy cycles.
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BACKGROUND: In Sierra Leone, over 4000 individuals survived Ebola since the outbreak began in 2014. Because Ebola survivorship was largely unprecedented prior to this outbreak, little is known about survivor experiences during and post illness. METHODS: To assess survivors' experiences and attitudes related to Ebola, 28 in-depth interviews and short quantitative surveys with survivors from all four geographic regions of Sierra Leone were conducted in May 2015. RESULTS: Survivor experiences, emotions and attitudes changed over time as they moved from disease onset to treatment, discharge and life post-discharge. Survivors mentioned experiencing acute fear and depression when they fell ill. Only half reported positive experiences in holding centres but nearly all were positive about their treatment centre experiences. Survivor euphoria on discharge was followed by concerns about their financial situation and future. While all reported supportive attitudes from family members, about a third described discrimination and stigma from their communities. Over a third became unemployed, especially those previously engaged in petty trade. Survivor knowledge about sexual transmission risk reflected counselling messages. Many expressed altruistic motivations for abstinence or condom use. In addition, survivors were strongly motivated to help end Ebola and to improve the healthcare system. Key recommendations from survivors included improved counselling in holding centres and long-term government support for survivors, including opportunities for participation in Ebola response efforts. CONCLUSIONS: Survivors face myriad economic, social and health challenges. Addressing survivor concerns, including the discrimination they face, could facilitate their reintegration into communities and their contributions to future Ebola responses.
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