CORBEL Report on implementation, including economic model and solutions for sustainability
Creators: name: Lydall, Ben
Publisher: name: Zenodo
Year: 2020
Subjects: Life science research infrastructures
Repositories for clinical trial data
Sustainable repositories

description: This paper assesses options on how to build upon the work performed by ECRIN in developing a demonstrator repository in DSpace and assessing its performance as an example of best practice. In particular, it considers how any approach may be made sustainable. The five options considered are: To create a community of practice by making the demonstrator, academic work around repositories and quality criteria, and perhaps advice, publicly available to assist others in development of repositories and influence culture, practices, perhaps certification and even regulations around data storage and data sharing; To utilise the repository for storing and analysing clinical trial data, either that of ECRIN or of others; To further develop the demonstrator into a state-of-the-art operational repository for mass data sharing, perhaps in conjunction with EOSC-Life; Building upon the work on the creation of and assessment of the demonstrator, ECRIN could develop, offer and run a costed repository support service, specialising in sensitive data based upon Figshare; Development of repository services in the context of a model for future rapid response framework for health emergency readiness. For each of these options the elements of viability, utility and long-term sustainability are considered. The first option appears to be of great potential benefit relative to the costs involved in set-up and operations. The extent to which further work is done in this area would depend upon ongoing assessment of needs, uptake and resources available, but no upfront commitment in terms of time or resources would be required and further developments could be implemented as appropriate in the future. These facets of low-risk and scale-ability make it an attractive option. Moreover, pursuing it does not preclude any of the others and may in fact be complementary to any of these. For this reason, it is recommended. The second option does not appear to be easily practicable due to considerable complexities with regard to clinical trial data sharing, especially in Europe’s multi-national and complex legislative setting. The third option would require considerable funding, both for the development of the operational repository, which may be attainable by means of an EOSC-Life Open Call or other funding instruments, and more significantly for the continuing operations of the repository. This would not be easy to secure and without it there would little to no long-term utility to the project. A convincing strategy to secure this must be developed in order to proceed. A further significant issue to be addressed in this scenario is the utility of duplicating resources or services already provided by other parties, for example Vivli, in respect of the scale of the potential project, and RDR (UCL Research Data Repository) as a repository planning to interact with the European Open Science Cloud. Further consideration should be given to how the operational repository would meet important needs that are not and likely will not be met by other parties. Potentially significant issues in assessing this are the difference between pseudonymised and anonymised data, legal problems with EU data being held on servers based in the US, and the particular capacities provided (e.g. with the European Open Science Cloud) that offer unique advantages. This option would only be viable if significant long-term funders expressed serious interest. It would be useful to investigate this and, if opportunities were identified, to adapt a plan to the funders’ more specific requirements. Currently there is no convincing strategy to secure this and so it is not a viable route at the moment. The fourth option would build upon the work performed in the first option. It would require modest capital outlay in developing the Figshare application, but the operational costs would be variable according to demand and thus quickly scaleable. Analysis indicates that the services would be useful, in reasonable demand, and economically viable. Further developments such as certifications or more comprehensive methods of advice and best practice guides could be implemented based upon the initial service provision. This option, if funding for development is available, could be pursued and offers utility. However, many of the useful elements of this option would also be served by the fifth option, which is even more attractive. Were the fifth option to be developed, some of the repository support services would form a complementary part of the operation. The fifth option, offering the most effective and important long-term deliverable, involves the immediate development of the repository in the context of a model for future rapid response framework for health emergency readiness. This model would include services, protocols and legal frameworks established to facilitate rapid re-use of the system. Given the positive environment with funders and potential collaborators it is recommended that this be pursued.