With this extra newsletter, data4lifesciences would like to announce that the revised version of the Handbook for Adequate Natural Data Stewardship (HANDS2.0) was launched on November 28 at the Dataprijs 2018.
This handbook is written by experts with knowledge of the current regulations and best practices in data stewardship. It addresses topics such as the FAIR data principles, content of a data management plan and how to archive and share data. To highlight the importance of HANDS2.0 and the sharing of knowledge, Paula Jansen and Rob Hooft explain in the interview 'To shared data stewardship with guidelines support' why they believe a shared data stewardship policy supported by all UMCs is important and how researchers and research support can have easy access to each other’s data stewardship expertise and training.
Data4lifesciences aims to connect the research data infrastructure of the Dutch UMCs. At the administrative level, this calls for a shared data stewardship policy supported by all UMCs. At the work floor level, it calls for easy access to each other’s data stewardship expertise, training and support. Since the launch of Data4lifesciences in 2014, Professor Frank Miedema, Dr Paula Jansen and Dr Rob Hooft have worked hard to achieve these goals.
Professor Frank Miedema of UMC Utrecht leads the work package ‘Collection and harmonisation of guidelines for data stewardship’. He explains: “A data stewardship policy supported by all Dutch UMCs is an essential prerequisite for sharing and reusing each other’s research data. Our work package has developed a Handbook for Adequate Natural Data Stewardship (HANDS). Written by experts with knowledge of the current regulations and best practices in data stewardship, this handbook contains guidelines for data stewardship. It addresses topics such as the FAIR data principles, the data management plan (DMP), privacy and autonomy of study subjects, reuse and collection of data, documentation and standardisation, archiving and sharing data. The UMCs have agreed to base their data stewardship policies on HANDS’ guidelines.”
While HANDS functions as a guideline for policy makers at the UMCs, it also functions as a practical handbook for data stewards. Dr Paula Jansen is Staff Advisor at the Research Office of UMC Utrecht and the Chief Editor of HANDS. She explains: ‘We wrote HANDS as a practical handbook for people at the work floor, aiming to promote good data stewardship within the eight Dutch UMCs. At the same time, HANDS should provide the framework for the implementation of the Data4lifesciences infrastructure at the UMCs. Our idea was that HANDS would provide instructions on how to handle research data, as well as pointers to local and national expertise. We presented the first version of HANDS at the ‘Empowering Personalised Medicine & Health Research’ conference in 2015. But to be honest, this first edition did not contain many practical pointers yet and the content was rather incomplete. The details still had to be supplied by the UMCs.”
In 2018, the team thoroughly revised HANDS based on expert consultation sessions and readers’ comments. HANDS 2.0 appeared online on 28 November 2018. Jansen: “We have added a toolbox with data stewardship resources at the UMCs and other national and international organisations to accommodate the need for practical pointers. The 2.0 edition also addresses new laws and regulations such as the ‘Meldplicht Datalekken’ and the General Data Protection Regulation. This has resulted, among other things, in more attention for documentation and privacy in HANDS 2.0.”
“While working on the revision of HANDS, it really struck me how much progress the field has made since we created HANDS 1.0. At that time, data stewardship was a rather abstract concept and people were struggling with definitions. Data management plans were mentioned only briefly in HANDS 1.0. Now, data stewardship is recognised as an essential part of scientific research from the administrative level to the work floor. Reusing data, citing data sets, and working with a data management plan have become much more common. And people are more aware of the costs of adequate data stewardship. So, while HANDS 1.0 was more like a kick-off to announce that the UMCs intended to work on the topics described in the handbook, HANDS 2.0 truly has body. And the toolbox should help researchers to determine the best data stewardship for their research,” concludes Jansen.
At many UMCs, the local data stewardship support is organised as a data service desk. The work of these desks is harmonised by the Data4lifesciences work package ‘Access to experts, training, and support’. Dr Rob Hooft of the Dutch Techcentre for Life Sciences (DTL) is the coordinator of this work package. He explains: “The data desks should help researchers and support staff to easily locate data stewardship expertise, training, and support at their own UMC or elsewhere. Our work package is connecting the data service desks with each other and with other relevant stakeholders. In the past few years, we have made a tour around the UMCs, discussing their needs and shaping the idea of what a data desk should look like. We encourage them to exchange experiences in setting up and running a data desk. In addition, it is important that the data desks are aware of each other’s expertise, because each UMC has its own specialty with regard to data stewardship.”
Hooft continues: “In addition to building a community to exchange data expertise, we aim to professionalise the data steward function. Amongst other things, we want to do this by creating a national teaching and training programme. ZonMw has recently allocated funding to a project related to this. Many data trainings have been developed in the Netherlands in the last few years. For instance, the UMCG data stewardship desk organises a data management training for PhD students. This two-hour training creates awareness of the fundamentals of research data management, addressing the FAIR principles, personal data, and more. In September 2017, it became obligatory for all UMCG PhD students, and they are now offering it several times a month. The other UMCs are enthusiastic about this initiative and we are looking into the possibilities to start a similar course at the other UMCs.” (Read more about the UMCG data stewardship desk in this interview.)
Into the future
Miedema concludes: “Good data stewardship is a prerequisite for Open Science and it is rapidly becoming common practice within the UMCs. As a consequence, the re-use of research data will become natural. Both patients and the general public will benefit from this development. A great deal of expertise that is required for adequate data stewardship is concentrated at the data desks. Future collaborations between these two Data4lifesciences work packages can make it increasingly easy for researchers to find their way through the data maze and get the most out of their investments in collecting and stewarding data.”
Work package Facts
Coordination: UMC Utrecht
Related downloads: D4LS WP9 work plan