HANDS

Handbook for Adequate Data Management.
Guidelines for data stewardship and practical toolbox for researchers at Dutch University Medical Centers (UMCs).

    About

    The Handbook for Adequate Natural Data Stewardship (HANDS) provides researchers from the eight Dutch University Medical Centers (UMCs) with guidelines for data stewardship and lists of practical steps for each phase of the data lifecycle of research data. A toolbox points to additional expertise and resources within or outside your UMC. It provides information for all people involved in data stewardship, from researchers and data stewards to policy makers and IT infrastructure developers.

    The content of HANDS is continuously improved and updated. Suggestions for improvement can be sent to servicedesk@health-ri.nl.

    UMC Policy

    Each UMC has its own formal policy for data stewardship (for example in the Research Code). The deans of the UMCs have agreed to base their formal policy on the shared guidelines described in HANDS. HANDS does not prescribe which infrastructure each UMC must use or apply, but formulates guidelines for developing general infrastructures. Each UMC is advised to set up a central internal helpdesk for questions about data management and data stewardship.

    Data stewardship

    Data stewardship refers to sustainable care for research data as an integral part of the research process. It includes all actions needed to make digital research data Findable, Accessible, Interoperable and Reusable (FAIR) during and after your research project, including data management, archiving and reuse by third parties.

    Adequate data stewardship is a prerequisite for high-quality science.

    • The Dutch Federation of University Medical Centers (NFU) recommends that the management of research data in the eight Dutch UMCs complies with HANDS.
    • HANDS is in line with the Dutch Code of Conduct for Scientific Practice, the recommendations of the National Coordination Point Research Data Management (LCRDM) and guidelines that apply specifically to UMCs.
    • HANDS is a national contribution to the global Open Science ambition.

     Data Stewardship Handboek
     

    Further information


    The making of HANDS
     

    HANDS edition 2.0

    The second updated edition of HANDS (2018) was written by a small team from the NFU Data4lifesciences programme. It was updated because of:

    • new laws and regulations that have come into force;
    • new insights into what issues an NFU (or UMC) policy on data stewardship should address;
    • new answers to frequently asked questions, as a result of debate and progress on this topic at UMCs, universities and other organisations such as the National Coordination Point for Research Data Management (LCRDM), the Dutch Techcentre for Life Sciences (DTL) and Health-RI;
    • new developments in policies, tools, infrastructure and architecture at UMCs and universities.

    For the publication of this digital version of HANDS 2.0*, experts on specific topics were consulted and feedback was collected from researchers and support staff at UMCs. For the “Credits” section, grateful use was made of the Utrecht University website.

    *With thanks to:
    Els Swennen, Pascal Suppers, Tom Delnoy: Maastricht UMC+.
    Petra van Overveld, Marco Roos, Sonja Meeuwsen: LUMC
    Salome Scholtens: UMCG
    Bert van Ooijen: Erasmus MC
    Chantal Steegers, Klaudia Onnasch, Erik van Ieperen, Rudy Scholte, Jeroen Belien, Sander de Ridder, Ronald van Schijndel, Gepke Uiterdijk: Amsterdam UMC
    Susanne Rebers: ELSI Servicedesk/NKI
    Ingeborg Verheul: LCRDM
    Jan-Willem Boiten: D4LS/Lygature

    Editor (2018)

    Paula Jansen
    Petra van Overveld
    Linda van den Berg

    HANDS edition 1.0

    The first edition of HANDS was written by members of the NFU data stewardship committee in 2014-2015 as part of the NFU Data4lifesciences programme. The preliminary first version was shared with all Dutch UMCs and a large number of national organisations during a consultation round in September 2015. The deans of the eight UMCs were asked to share this preliminary document at least with their local Security officer, Privacy officer (Data Protection Officer), Research Policy Advisor(s), some researchers and some ICT specialists.

    Editor (2015)

    Linda van den Berg - Washoe Life Science Communications
    Paula Jansen (secretary) - Erasmus MC, UMCU

    Authors (2015)

    Peter Doorn - DANS, KNAW
    Rob Hooft - DTL
    Evert van Leeuwen -Radboudumc
    Leendert Looijenga - Federa
    Barend Bergen - DTL, LUMC
    Arnoud van der Maas -Radboudumc
    Ronald Brand - LUMC
    Morris Swertz Jan Jurjen Uitterdijk, Pieter Neerincx - UMCG
    Jan Hazelzet, Linda Mook - Erasmus MC
    Thijs Spigt - TTO, Erasmus MC
    Evert Ben van Veen - MedLawConsult
    Margreet Bloemers - ZonMw
    Jan Willem Boiten - CTMM-TraIT
    Cor Oosterwijk, Tessa van der Valk - VSOP
    Jaap Verweij (chairman) - Erasmus MC

    The following organisations were consulted:

    • Central Committee on Human Subjects Research (CCMO);
    • Centre for Translational Medicine (CTMM-TraIT);
    • Dutch Techcentre for Life Sciences (DTL/ELIXIR-NL);
    • Nederlands Normalisatie Instituut (NEN);
    • Nictiz;
    • Nederlandse Patiënten Consumenten Federatie (NCPF);
    • Parelsnoer Instituut (PSI);
    • Samenwerkende Gezondheidsfondsen (SGF);
    • Vereniging van Universiteiten (VSNU);
    • Landelijk Coördinatiepunt Research Data Management (LCRDM)
    • 4TU Datacentrum (4TU/SURF);
    • NWO;
    • BBRMI. nl;
    • Data4lifesciences programme committee and operational board.
    HANDS
    Training & guidance
    NFU