Good data stewardship creates novel research opportunities. Scientists, patients, and the general public will benefit from new scientific knowledge, treatments, and applications that result from sharing high-quality data.
Data stewardship constitutes an essential part of science. Good data stewardship helps you organise and responsibly perform your research, increasing its quality. Promoting optimal (re)use of research data (Open Science) is one of the ambitions of the Netherlands (Nationaal Plan Open Science) and the European Union (EOSC Declaration). Future science and scientists will benefit from the efforts that are made today (Open Science 2030). New collaborations, discoveries and innovations will arise from reusing your research data across research fields and disciplines. Both patients and the general public will benefit from new scientific knowledge, treatments and applications that result from shared, trustworthy data.
On top of that, data stewardship is necessary to:
- meet legal and ethical requirements, including privacy of study subjects;
- protect your scientific integrity (VSNU code (Dutch) VSNU code (English));
- meet the requirements of research funders;
- meet the requirements of scientific journals concerning quality and traceability of data;
- meet the needs of patients who wish that their data are optimally and respectfully used to improve healthcare.
Scientific research at UMCs often involves patients and patient data. Therefore, HANDS devotes special attention to patient participation, privacy and data security, throughout the research data lifecycle. The guidelines in HANDS align with most common practices at the UMCs, and align with research practices at other institutions such as universities.
Frequently Asked Questions
What legal requirements, codes and principles form the basis for HANDS?
Several legal requirements and codes relate to data stewardship:
European laws and regulations
- EU General Data Protection Regulation (GDPR);
- European Code of Conduct for Research Integrity (ALLEA, 2017)
Dutch laws and regulations
- Uitvoeringswet Algemene Verordening Gegevensbescherming (AVG);
- Wet op Geneeskundige Behandelingsovereenkomst (WBGO);
- Gedragscode Wetenschapsbeoefening (VSNU);
- Requirements that apply specifically to medical scientific research involving humans: overview on the CCMO website;
- Medical Research Involving Human Subjects Act WMO;
- NFU guidelines for research involving humans: Kwaliteitsborging van mensgebonden onderzoek 2.0;
- Federa’s 'gedragscodes': Gedragscode Gezondheidsonderzoek (Code Goed Gedrag), Gedragscode Verantwoord omgaan met lichaamsmateriaal (Code Goed Gebruik)
Institutional requirements and codes
- Institutional Research Code;
- Institutional Data Stewardship Policy.
- The FAIR Guiding Principles for scientific data management and stewardship;
- GO FAIR: fosters the coherent development of the global Internet of FAIR Data & Services, with the main focus on early developments in the European Open Science Cloud, EOSC;
- Guidelines on FAIR Data Management in Horizon 2020;
- FAIR Metrics;
Research field-specific codes and guidelines
- WMA Declaration of Taipei on ethical considerations regarding Health Databases and Biobanks;
- Guidelines and protocols for human genetic research as formulated by the Vereniging Klinische Genetica Nederland (VKGN) and the European Society for Human Genetics (ESHG);
- The website of the SIIS Laboratory describes data provenance.
What are the possible consequences of ignoring the policies and recommendations for data stewardship?
- data loss;
- loss of overview of research;
- delay of research;
- lack of reproducibility;
- reputation damage;
- losing or having to refund a research grant.
What do research funders expect?
Research funders require varying degrees of data stewardship efforts. Many research funders request that you:
- create and follow a data management plan;
- create FAIR data;
- share some or all of your data with the public;
- share some or all of your data for further research or verification of your research results.
Recently, KNAW, VSNU, eScience Centre, NWO and ZonMw have signed the San Francisco Declaration on Research Assessment (DORA). As a consequence, scientific output [other than publications] that has scientific and/or societal impact (such as data, software, code, patents, etc.) will be part of determining quality of research output.