The Radboud Technology Center Data Stewardship provides services on the topic of research ICT.

Transcription

1 The Radboud Technology Center Data Stewardship provides services on the topic of research ICT. Our team is currently working on the project Digital Research Environment, which will result in a research ICT platform. This platform will help researchers capture, handle, analyze, store and share their (complex) data, while taking care of laws and regulations. Our aim is to make research ICT worry free and to optimize the use of research data. If you want to get involved in creating the platform, please let us know. We are currently selecting showcases (research projects) which help us define what is needed and allow us demonstrate the capabilities of the platform. Do you have an idea for a showcase? Please let us know! If you need more information or want a presentation of our project and services, please do not hesitate to contact us. Mission statement: To provide knowledge, services and solutions to fulfill Radboudumc research ICT needs, in a way that fits the individual study. The solutions includes an ICT platform which allows researchers to import, merge, optimize, store, analyse, archive and share data from various (inter)national sources in a single scalable work-space per study. The use of these work-spaces increases research efficiency and output, thereby increasing scientific impact of the Radboudumc. The sustainable, secure, law compliant infrastructure places the Radboudumc in a key position as scientific partner. News March 2 nd 2015: tender published! First step in selecting a supplier-in-partnership for constructing the Digital Research Environment. Why and for whom? The Radboud Technology Center Data Stewardship addresses the following research issues in medical scientific research in the Radboudumc (and beyond): Lack of: o standard research ICT facilities (the wheel is re-invented time and again, loss of time). o knowledge of research ICT infrastructure and data sources. o computing power and data storage facilities. Difficulties in: o accessing and disclosing data sources such as Epic. o complying to laws and regulations with regard to data management. o re-use and sharing of data and analyses. o re-producing of analyses. o collecting data: often based on duplicate and manual tasks. Do you think anything is missing from this list? Please let us know! A Digital Research Environment (DRE for short) is currently being created, in order to solve the problems above. You can find more details and information on the DRE page. Our initial focus is on solving research ICT problems for Radboudumc researchers, but we aim for solutions which can be used by all types of researchers where ever they are. Pagina 1 van 9

2 Digital Research Environment What is the Digital Research Environment? The Digital Research Environment (DRE) is an ICT platform which helps researchers handle their data, it is basically a place where you can create dedicated and secure virtual work-spaces for any kind of data project. Within these work-spaces, you can use ICT tools which enables you to import, merge, optimize, store, analyze, archive and share your research data. The DRE is webbased and accessible through a portal, creating and using the work-spaces is mostly a self-service experience. As a researcher, you are therefore in full control of your data. You can invite (external) colleagues into your work-space for collaboration, and with the same ease revoke access at any time. Want to know when you can use the DRE? Find out here. Each work-space is fully scalable with regard to data quantity and computing power, thereby supporting anything from small to complex multicenter, multi-source studies. Moreover, the work-space enables you to perform worry free research, meaning that security, ICT infrastructure and Key features of the DRE compliance with laws and regulations are automatically taken care Secure work-spaces Self service for researchers Data from sources like Epic of when using the DRE. For example, you don t have to think about an audit trail for your data: it is there! Import/export of data Multiple types of data: clinical, images, omics etc Pseudonymization software App store with analytics and reporting You can handle many data types from various sources within you work-space. Some examples: data collected with a survey tool or an electronic data capture tool like Castor and RedCap, data from measuring equipment, IKNL data, clinical data from Biobanks and omics data. tools Possible to publish your own analytics to app store High Performance Computing Single and multi center Compliance to laws and regulations (like audit trail) Archiving Widely used data sources like Epic will be made available within the DRE as a standardized data collection, from which you can extract data into your work-space. The idea is that you can choose the data items you need (and have permission to use) for your study from a self-service menu. That means that you will no longer need to manually copy patient data to your research database. Much safer and quicker! Here you read more on Epic and the DRE. Collaboration and sharing The idea is that you can use the DRE in a self-service fashion, so as make your research flow as smoothly as possible. However, if you need help, the Data Stewardship team will be there to assist you. As soon as the DRE is up and running, we will provide contact details. How does this translate to every day research? Let us explain by showing you a picture of a real life research project as an example. This set of symbols represents the data flow of the Geheugenpoli of the Geriatrics department. Read it from left to right. Pagina 2 van 9

3 B G E F D G C A Explanation of figure above A First, the researchers import data from various sources into the Geheugenpoli work-space (which is actually a registry, so a permanently active work-space). B C Once data crosses the thin red border of the DRE and the thick red border of the work-space, pseudonymization software takes care of the keys. A snap shot (a frozen copy) of the data is made on behalf of the audit trail. D E F G When the keys are in place, the researchers can merge the different data sources, or leave them as separate data sets. E) All kinds of analytics and reporting can be done on the complete data set or subsets. Analytic and reporting tools can be activated from an app store, to which researchers can also add their own tools. High Performance Computing can be ordered and scheduled from the work-space. F) The researchers archive results at will. G) Data (sub)sets can be shared with colleagues outside the DRE or sent to another workspace for further use. When data is exported from the work-space different keys will be added by the software, so as to optimize the privacy of the participants. All data modifications and import/export actions are logged by the audit trail. The owners of the Geheugenpoli work-space grant or revoke access to their work-space by a self-service user management tool. What will the DRE look like? Below are a few screen shots of a possible user interface, the screens you can use as a dashboard to make use of the facilities the DRE has to offer. Important note: the pictures below are mock-ups only, not definite screens, just to get an idea of how the DRE will look when using it. Pagina 3 van 9

4 Pagina 4 van 9

5 Pagina 5 van 9

6 Pagina 6 van 9

7 Project details and timelines The realization of the Digital Research Environment (DRE) will be driven by showcases. By showcase we mean an actual research project with ICT needs when it comes to handling data. By providing solutions for the showcases, we will build the DRE in steps, based on real-life research ICT problems and questions. The underlying idea is: we will only build functionalities for which researchers have a practical use. We are currently selecting showcases, please let us know if you want to participate, and help us build the DRE. Project planning March-October 2015 September-October 2015 November-December 2015 December 2015 January-December 2016 January 2017 Ongoing Selection of supplier, selection of showcases Realization of Proof of Concept (Geheugenpoli Geriatrics) Realization first showcase Evaluation of results Realization of additional showcases and up-scaling DRE open for broad use by researchers of Radboudumc (including multi center studies) Optimalization and addition of functionalities Relation to Epic Epic is an important source of data to researchers of the Radboudumc. Many data items which are collected during the regular case process are vital to research projects. Moreover, many data items which are collected specifically for research purposes are best collected through Epic, as capture can be integrated into the care process. This saves time, effort, money and leads to more complete data sets as no separate processes and software of paper have to be managed by the research team. The big idea behind this is integration of care and research and the idea of capture once, use many. Which means that if you carefully register a data item once at the source (in this case Epic), and make it available so it can be used for multiple purposes, you get more reliable and accurate data sets for research, as no manual copying of data into the research database is needed. Of course the capture once, use many idea must be supported by the Epic screens in order to work. To that end, effort is being put into optimizing the Epic screens, so care and research can be integrated. The first integrated data flow has been realized for the CVA Parel, the building of which serves as a blueprint for other Parels and registries to follow. In the DRE a special work-space will be created, which is filled with care and research data from Epic. This Epic workspace is not directly accessible, but researchers will be able to extract a subset of data to their own work-space via a menu. We have to think about the process of extracting Epic data, for example how the DRE can check whether a researcher has (CMO) permission to use the requested data. However the aim is to make the entire process selfservice, so you get your data in the least possible time. Pagina 7 van 9

8 What is Data Stewardship? Great buzz word Data Stewardship, but what is it and why do we need it? What? Radboud data assets = research data SearchDataManagement says: Data Stewardship is the management and oversight of an organization's data assets to help provide business users with high-quality data that is easily accessible in a consistent manner. Radboud business users = researchers Radboud accessible = self-service Radboud consistent manner = Digital Research Environment Why? Research data are getting bigger all the time, while ICT solutions are currently lagging behind. This means the Radboudumc researchers and management have no real oversight of their data. Good Data Stewardship enables researchers to produce high quality and consistent data, which is easily accessible. Thereby essentially assisting researchers in what they do best: great research! If you want to get involved in creating the platform, please let us know. We are currently selecting show cases (research projects) which help us define what is needed and demonstrate the capabilities of the platform. Criteria for showcases and information about practicalities can be found here. The Radboud Technology Center Data Stewardship is part of the department Information Management. Criteria for showcases The realization of the Digital Research Environment (DRE) will be driven by showcases. By showcase we mean an actual research project with ICT needs when it comes to handling data. By providing solutions for the showcases, we will build the DRE in steps, based on real-life research ICT problems and questions. The underlying idea is: we will only build functionalities for which researchers have a practical use. If nobody needs a certain feature, why create it? The following criteria apply when defining a good showcase: Showcases solve a problem which is experienced by others in the Radboudumc: the solution which is build can be used by other researchers. The broader the re-use of the solution, the better. The department which presents the showcase has funding for the costs arising from use of the DRE and if applicable, for building department specific solutions. The idea is that the DRE project pays for creating the reusable solutions (the backbone of components of the DRE), the actual use of these is paid by the department. With actual use we mean running costs of storage, computing power etc. The showcases have a high impact, either by the solutions which are created or by (inter)national exposure and networking effects. Practicalities around showcases are the following: Owners describe the showcase in detail (data flow, who does what and when, types of data etc.), please contact Ariaan Siezen for assistance. Pagina 8 van 9

9 Owners are invited to present their showcase to the Steering Committee of the DRE. We will help you sell your story to the Committee. The Steering Committee chooses and prioritizes the showcases which were presented. We will contact the owners of the selected showcases to make further plans. The Steering Committee is currently being formed, more details will be available on this website soon. Pagina 9 van 9