DOI: 10.3897/rio.3.e21700

Authors: Cameron Neylon

Abstract: The project “Problemes négligés du système de santé au Niger” focusses on a core set of often-neglected issues that nevertheless have an overall negative impact on health system effectiveness in Niger. For example, poor quality maternal health services result from challenges related to the midwifery profession and from pressures from addressing the effects of illegal termination of pregnancy. Overall health system governance is undermined by weak management of human resources and health information systems as well as problems related to decentralisation of health care provision and dependence on external funding for health projects. LASDEL applies a rapid assessment and qualitative research approach to working with patients and health care professionals to identify the scale and characteristics of these problems. The project goal is to develop an evidence base to support tackling these neglected issues. Développer des recherches sur les « problèmes négligés » dans la gouvernance de la santé, et sur cette base contribuer à des réformes des systèmes de santé permettant une meilleure qualité des soins pour les populations vulnérables. "Develop research on "neglected problems" in the provision of health systems, and through this work, contribute to health system reforms, that provide better quality of care for vulnerable populations." As can be seen above, many of these issues relate to reproductive health and more generally to health issues of disadvantaged groups. Some issues are neglected for political or social reasons meaning that they are not recognised or acknowledged and in some cases are criminalised. Therefore there are profound issues of participant privacy, protection and even safety for this project. Data sharing therefore requires thoughtful anonymisation and selection. The project group is Francophone with limited English language knowledge and the researchers and the context is largely in French. In common with much of Francophone Africa there has been limited development of Open Access to research outputs or Open Research Data agendas at governmental or funder levels. Outside of Canada and France there has been limited development of infrastructure, systems or policy relating to data sharing in the global francophonie specifically.

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DOI: 10.3897/rio.3.e21703

Authors: Cameron Neylon

Abstract: The Tobacco Control Economics Project is a project that seeks to gather evidence on tobacco use and economics in southern Africa. It is a project of the University of Cape Town with support from the DataFirst repository based at the University of Cape Town. Its aim is to gather data that already exists, sometimes in digital form, frequently in offline records or in some cases paper records, and bring them together as an open resource. The project faces challenges of data gathering as well as permissions. Frequently data is or should be “available” in some form but control over the data is relinquished only unreluctantly. In many cases the legal standing of data is unclear. Many of the challenges relating to the bringing together of the data involve ascertaining what the legal standing of a dataset is or gaining permissions for its re-use. DataFirst is a longstanding data sharing infrastructure with professional and experienced data management staff. Challenges of ensuring continued funding and maintenance are similar to those of data infrastructures globally. The infrastructure meets international standards and provides leadership to other services and platforms in this space.

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DOI: 10.3897/rio.3.e21705

Authors: Cameron Neylon

Abstract: There is a wide and growing interest in promoting Research Data Management (RDM) and Research Data Sharing (RDS) from many stakeholders in the research enterprise. Funders are under pressure from activists, from government, and from the wider public agenda towards greater transparency and access to encourage, require, and deliver improved data practices from the researchers they fund. Funders are responding to this, and to their own interest in improved practice, by developing and implementing policies on RDM and RDS. In this review we examine the state of funder policies, the process of implementation and available guidance to identify the challenges and opportunities for funders in developing policy and delivering on the aspirations for improved community practice, greater transparency and engagement, and enhanced impact. The review is divided into three parts. The first two components are based on desk research: a survey of existing policy statements drawing in part on existing surveys and a brief review of available guidance on policy development for funders. The third part addresses the experience of policy implementation through interviews with funders, policy developers, and infrastructure providers. In our review we identify, in common with other surveys, that RDM and RDS policies are increasingly common. The most developed are found amongst funders in the United States, United Kingdom, Australia, and European Union. However many other funders and nations have aspirational statements or are developing policy. There is a broad pattern of policy development moving from aspiration, to recommendations, to requirements, and finally reporting and auditing of data management practice. There are strong similarities across policies: a requirement for data management planning, often in grant submissions, expectations that data supporting published articles will be made available, and in many cases requirements for data archiving and availability over extended periods beyond grants. However there are also important differences in implementation. There is essentially no information available on the uptake and success of different policies in terms of compliance rates, or degrees of data availability. Many policies require a Data Management Plan as part of grant submission. This requirement can be enforced but there is disagreement on the value of this. One view is that requirements such as DMPs are the only way to force researchers to pay attention to these issues. The other is that such requirements lead to a culture of compliance in which the minimal effort is made and planning is seen as a “tick-box” exercise that has no further value. In this view requirements such as DMPs may actually be damaging the effort to effect culture change towards improved community practice. One way to bring these two views together is to see DMPs as living documents that form the basis of collaboration between researchers, funders, and data managers throughout the life of a research project. This approach is reflected in guidance on policy development that emphasises the importance of clarifying responsibilities of various stakeholders and ensuring that researchers are both recognised for good practice and see tangible benefits. More broadly this points to the need for the program of improving RDM and RDS to be shared project with the incentives for funders and researchers aligned as far as is possible. In the interviews successful policy implementation was often seen to be dependent on funders providing the required support, both in the form of infrastructure and resourcing, and via the provision of internal expertise amongst program managers. Where resources are limited, leveraging other support, especially from institutional sources, was seen as important as was ensuring the scope of policy requirements were commensurate with the support available and readiness of research communities. Throughout the desk research and the interviews a consistent theme is the desire for cultural change, where data management and sharing practices are embedded within the norms of behaviour for research communities. There is general agreement that progress from aspirational policies to achieving compliance is challenging and that broad cultural change, with the exception of specific communities, is a long way off. It is interesting to note that discussion of cultural change is largely externalised. There is little engagement with the concept of culture as an issue to consider or work with and very little engagement with models of how cultural change could be enabled. The disagreement over the value of DMPs is one example of how a lack of active engagement with culture and how it changes is leading to problems. Key Findings Policies on RDM and RDS are being developed by a number of agencies, primarily in the Global North. These policies are broadly consistent in aspiration and outlines but differ significantly in details of implementation. Policies generally develop along a path starting with aspirational statements, followed by recommendations, then requirements, and finally auditing and compliance measures. Measurement of policy adoption and compliance in terms of the over goals of increased availability and re-use of data is not tracked and is likely unmeasurable currently. Data Management Plans are a central requirement for many policies, in part because they can be made compulsory and act as a general focus for raising awareness. There are significant differences in the views of stakeholders on the value of Data Management Planning in its current form. Some stakeholders regard them as successful in raising awareness albeit with some limitations. Some regard them as actively damaging progress towards real change in practice by making RDM appear as one administrative activity among the many required for grant submission Successful policy implementation is coupled with funder support for infrastructure and training. Seeing RDM as an area for collaboration between funders and researchers may be valuable Internal expertise and support within a funder is often a gap which becomes a problem with monitoring and implementation DMPs can be a helpful part of process but it will be important to make them useful documents throughout and beyond the project If the object of RDM and RDS policy is cultural change in research communities then direct engagement with understanding the various cultures of researcher and other stakeholder communities, alongside frameworks of how they change is an important area for future focus.

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DOI: 10.3897/rio.3.e14837

Authors: Lynn Woolfrey

Abstract: The purpose of this project is to demonstrate that tobacco-related data from selected Africa countries can be collected and distributed from an Open Data platform. The platform and data will improve the capacity for tobacco control research in key sub-Saharan African countries, and help develop a continent-wide research approach to tobacco control. 

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DOI: 10.3897/rio.3.e14673

Authors: Cameron Neylon

Abstract: There is a wide and growing interest in promoting Research Data Management (RDM) and Research Data Sharing (RDS) from many stakeholders in the research enterprise. Funders are under pressure from activists, from government, and from the wider public agenda towards greater transparency and access to encourage, require, and deliver improved data practices from the researchers they fund. Funders are responding to this, and to their own interest in improved practice, by developing and implementing policies on RDM and RDS. In this review we examine the state of funder policies, the process of implementation and available guidance to identify the challenges and opportunities for funders in developing policy and delivering on the aspirations for improved community practice, greater transparency and engagement, and enhanced impact. The review is divided into three parts. The first two components are based on desk research: a survey of existing policy statements drawing in part on existing surveys and a brief review of available guidance on policy development for funders. The third part addresses the experience of policy implementation through interviews with funders, policy developers, and infrastructure providers. In our review we identify, in common with other surveys, that RDM and RDS policies are increasingly common. The most developed are found amongst funders in the United States, United Kingdom, Australia, and European Union. However many other funders and nations have aspirational statements or are developing policy. There is a broad pattern of policy development moving from aspiration, to recommendations, to requirements, and finally reporting and auditing of data management practice. There are strong similarities across policies: a requirement for data management planning, often in grant submissions, expectations that data supporting published articles will be made available, and in many cases requirements for data archiving and availability over extended periods beyond grants. However there are also important differences in implementation. There is essentially no information available on the uptake and success of different policies in terms of compliance rates, or degrees of data availability. Many policies require a Data Management Plan as part of grant submission. This requirement can be enforced but there is disagreement on the value of this. One view is that requirements such as DMPs are the only way to force researchers to pay attention to these issues. The other is that such requirements lead to a culture of compliance in which the minimal effort is made and planning is seen as a “tick-box” exercise that has no further value. In this view requirements such as DMPs may actually be damaging the effort to effect culture change towards improved community practice. One way to bring these two views together is to see DMPs as living documents that form the basis of collaboration between researchers, funders, and data managers throughout the life of a research project. This approach is reflected in guidance on policy development that emphasises the importance of clarifying responsibilities of various stakeholders and ensuring that researchers are both recognised for good practice and see tangible benefits. More broadly this points to the need for the program of improving RDM and RDS to be shared project with the incentives for funders and researchers aligned as far as is possible. In the interviews successful policy implementation was often seen to be dependent on funders providing the required support, both in the form of infrastructure and resourcing, and via the provision of internal expertise amongst program managers. Where resources are limited, leveraging other support, especially from institutional sources, was seen as important as was ensuring the scope of policy requirements were commensurate with the support available and readiness of research communities. Throughout the desk research and the interviews a consistent theme is the desire for cultural change, where data management and sharing practices are embedded within the norms of behaviour for research communities. There is general agreement that progress from aspirational policies to achieving compliance is challenging and that broad cultural change, with the exception of specific communities, is a long way off. It is interesting to note that discussion of cultural change is largely externalised. There is little engagement with the concept of culture as an issue to consider or work with and very little engagement with models of how cultural change could be enabled. The disagreement over the value of DMPs is one example of how a lack of active engagement with culture and how it changes is leading to problems. Key Findings Policies on RDM and RDS are being developed by a number of agencies, primarily in the Global North. These policies are broadly consistent in aspiration and outlines but differ significantly in details of implementation. Policies generally develop along a path starting with aspirational statements, followed by recommendations, then requirements, and finally auditing and compliance measures. Measurement of policy adoption and compliance in terms of the over goals of increased availability and re-use of data is not tracked and is likely unmeasurable currently. Data Management Plans are a central requirement for many policies, in part because they can be made compulsory and act as a general focus for raising awareness. There are significant differences in the views of stakeholders on the value of Data Management Planning in its current form. Some stakeholders regard them as successful in raising awareness albeit with some limitations. Some regard them as actively damaging progress towards real change in practice by making RDM appear as one administrative activity among the many required for grant submission Successful policy implementation is coupled with funder support for infrastructure and training. Seeing RDM as an area for collaboration between funders and researchers may be valuable Internal expertise and support within a funder is often a gap which becomes a problem with monitoring and implementation DMPs can be a helpful part of process but it will be important to make them useful documents throughout and beyond the project If the object of RDM and RDS policy is cultural change in research communities then direct engagement with understanding the various cultures of researcher and other stakeholder communities, alongside frameworks of how they change is an important area for future focus.

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