Rules of Engagement (Draft)

This is a draft document! Health-RI is defining Rules of Engagement for particpation in Health-RI. Please provide use with your feedback at info@health-ri.nl

A. Pre-amble

1] Why rules of engagement

  • Health-RI establishes a collective data infrastructure for Health research that binds a great variety of organisations and individuals.
  • As a national platform, Health-RI operates with a strong driver towards societal innovation. The infrastructure assembled will operate as a public utility serving all stakeholders.
  • Each organisation or individual may have specific reasons and ambitions to collaborate in Health-RI or contribute to its infrastructure backbone and shared services centre;
  • The shared position of Healh-RI requires a generic agreement on the collective 'behaviour' of all stakeholders in the Health-RI framework, specifically of those who make their services and resources available via the Health-RI platform.
  • These Rules of Engagement will be actively communicated and made public. All Health-RI stakeholders fully endorse the Health-RI general principles and Rules of Enagement. 

2] General Principles

  • Health-RI aims to operate as a collective infrastructure. It is up to enable research and innovation in the Dutch health domain, but it will not perform such research and innovation.
  • Health-RI actively supports the principles and global policies on Open Science, aiming to incentivise the effective (re-)use of knowledge and data for research and innovation across Health-RI stakeholders, in alignment with global initiatives.
  • Health-RI stakeholders actively promote the findability, accessibility, interoperability and reusability of health data for science and innovation and will not try to monopolize solutions based upon closed data solutions.
  • Health-RI strives for systematic implementation of the FAIR Principles. Health-RI stakeholders collectively work towards an increasing “level of FAIRness” of connected resources (incl. data collections, ICT and analytical software), where data and metadata are machine actionable.
  • Health-RI includes citizens and patients as primary stakeholders to establish an effective ecosystem for research and innovation into personalised health and medicine.
  • Health-RI assembles infrastructure resources and services provided by contributing partners in the Health-RI platform. At the central level, Health-RI provides certain shared services that surpass the level of individual stakeholders. Health-RI offers clear criteria for such shared services.

B. Rules of Engagement for organisations/stakeholders

  • Health-RI is inclusive: all stakeholders who endorse these general principles and rules of engagement are welcome to participate in Health-RI and/or to contribute to Health-RI.
  • Health-RI stakeholders will not try to obtain exclusivity at the expense of other (potential) parties; instead Health-RI aims to represent all relevant entities that contribute to a functional infrastructure, whereby Health-RI acts as the network organiser.

C. Criteria for distributed resources and shared services offered within the Health-RI platform (contributors)

  • Health-RI strives to provide a portfolio of shared services underpinning excellent health research. Services qualify as Health-RI shared service when meeting the following criteria:
  • Health-RI solutions meet the rules of engagement and certain quality criteria; researchers must be able to rely on the quality of Health-RI shared services (“no professorware” ).
  • Criteria for access to services and data in Health-RI are open and transparent: access may be restricted for certain legal or patient/participant consent considerations, but the procedure to request access and the conditions under which this access is granted, are openly available and applied in a transparent manner.
  • Services adhere to FAIR principles:
    • Findable: Data, tools and other resources are advertised in widely accessible catalogue
    • Accessible: See bullets above; data governance and access conditions should be transparent
    • Interoperable: At a semantic level: Common data standards and ontologies should be applied whenever feasible; sufficient meta data is added, but also at a technical level: the service should be interoperable with other shared service supporting the workflow of the researcher.
    • Reusable: Data, expertise and tooling remains available after completion of the project; the data governance remains in place after completion of the project
  • All services in Health-RI go provide clear information on how they comply to legislation and commonly accepted ethical standards, respecting ownership and participant/patient privacy.
  • Health-RI services are implemented according to the current standards in technology, data security, and user interface design.
  • Health-RI services are sustainable for a reasonable foreseeable horizon. Researchers should be able to trust on its existence during the lifetime of the project. If a service has to be phased out nevertheless, the Health-RI service provider supports the migration to a reasonable alternative to its best possible capabilities.
  • Health-RI shared services meet the needs of a broad group of researchers in the health domain.
  • Shared services are based on proven technology enabling research of others rather than being in itself subject to highly competitive research (i.e. being the rocket launcher, not the rocket science).