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HANDS

Handbook for Adequate Natural Data Stewardship

Guidelines on data stewardship and practical toolbox for researchers at Dutch University Medical Centres (UMCs).

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About

The Handbook for Adequate Natural Data Stewardship (HANDS) provides researchers at the eight Dutch University Medical Centres (UMCs) with guidelines on data stewardship as well as lists of practical steps to take for each stage of the research data life cycle. A toolbox refers to additional expertise and resources within or outside your UMC. It offers information for all people involved in data stewardship, from researchers and data stewards, to policy makers and developers of IT infrastructure. 

The content of HANDS is continually improved and updated. Please mail your suggestions for improvement at d4ls@health-ri.nl.

UMCs policies

Every UMC has its own formal policy on data stewardship (e.g., in the Research Code). The deans of the UMCs have agreed to base their formal policies on the shared guidelines described in HANDS. HANDS does not prescribe what infrastructure every UMC should use or apply but formulates guidelines for developing general infrastructures. Every 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 integral part of the research process. It covers all actions necessary 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.

     

    Data Stewardship Handbook

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    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 came into effect;
    • 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 made on this subject at UMCs, universities and other organisations such as the Landelijk Coördinatiepunt 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.

    Experts on specific subjects were consulted and feedback from researchers and support staff at UMCs was collected before publishing this digital version of HANDS 2.0*. For the section ‘Credits’ we made grateful use of the website of University of Utrecht.

    *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 UiterdijkAmsterdam UMC
    Susanne Rebers: ELSI Servicedesk/NKI
    Ingeborg VerheulLCRDM
    Jan-Willem Boiten: D4LS/Lygature

    Editors (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 requested to at least share this preliminary document with their local Security officer, Privacy officer (Data Protection Officer), Research Policy Advisor(s), several researchers, and several ICT specialists.

    Editors (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 Mons – 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:

    • Centrale Commissie Mensgebonden Onderzoek (CCMO);
    • Center 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.

    Datatypes Biosample Data, Clinical Imaging Data, Clinical Research Data, Digital Pathology Data, Experimental Data
    Research Process Access to Data & Samples, Analysis, Data generation, Define Research Question, Experimental Design, Improvement of Research/Care, Translation & Dissemination
    Type Document
    Status Mature
    Origin NFU
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