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Rules of Participation

Health-RI Terms & Conditions for Services & Tools

Health-RI is a public-private partnership of organizations involved in health research and care to realize the infrastructure necessary to give researchers, health care professionals and individuals optimal access to knowledge, tools, facilities, health data and samples. Health-RI aims to optimally facilitate data-driven health research & innovation. The overall goal is to enable personalized health and medicine.

The Health-RI partner network works jointly towards high-quality infrastructural facilities and services for research & innovation thus avoiding duplication of efforts. These actions aim at providing standard solutions for standard problems, improving data quality as well as reusability of data, thereby speeding up of innovation in health and healthcare. Open Science and FAIR data are key principles to arrive at these ambitions, which are therefore full-heartedly embraced by Health-RI.

Purpose of the Rules of Participation

The rules of participation aim to outline the criteria set to evaluate candidate Health-RI tools and services, and the process for admission of those services to the Health-RI platform.

Health-RI offers a limited number of generic services that are services and managed by the Health-RI organization. Most other tools & services accessible via the Health-RI platform are implemented and maintained from a broad network of service contributors reflecting Health-RI’s ambition to bundle and optimize the joint capabilities of the partner network. This inclusive nature of the Health-RI platform requires that promising tools and services from broader ecosystem can be embraced rapidly. On the other hand, Health-RI aims to maintain certain quality standards and high-level principles (such as Open Science and FAIR data) throughout its service portfolio, and to do so objectively and in a transparent way.

This is a draft

Services and tools qualify for inclusion in the Health-RI platform of services when meeting the following terms and conditions:

  1. General Principles
    a. Parties and individuals (contributors) providing a service will:
        i. actively support, and adhere to, the FAIR principles
        ii. comply with all applicable legal regulations and ethical standards
    b. Health-RI provides an inclusive national platform for tools & services and may offer multiple competitive services for each purpose
    c. Health-RI will consistently evaluate the uptake of services through transparent performance indicators
    d. 
    Users should be able to rely on services on the platform, i.e. a Health-RI service should meet quality standards and be offered with adequate (self)service to its users
    e. Health-RI is not liable for proper operation of the services or the information on individual services provided on the platform, unless otherwise stated
     
  2. Scope
    a. Services on the Health-RI platform fulfill a clear need in supporting research, innovation, and evaluation of health data, and support users in their endeavor to improve health (prevention, cure, care), among others in the fields of Translational research, Clinical Research, Artificial Intelligence, and Epidemiology
    b. Services on the Health-RI platform are primarily targeted towards users involved in health research and innovation
    c. Services may consist of software, analysis tools, procedures, documents, access to research facilities, access to data or biosamples, and other logistics operations
     
  3. Responsibility Health-RI towards contributors
    a. Health-RI provides a sustainable and user-friendly platform for tools & services as an independent service broker
    b. Health-RI will provide contributors with web analytics for their services on request
    c. Health-RI provides communication channels to advertise the platform and its underlying services
    d. Contributors may elect to make use of the support of the Health-RI servicedesk against the applicable fee published on the Health-RI website. 
    e. Health-RI provides a transparent selection process for all services offered to the platform following clear service standards and (quality)criteria

  4. Admission process for new services
    a. Contributors apply for admission of a service by contacting the Health-RI servicedesk
    b. 
    Candidate Health-RI services undergo a service in-take collecting all relevant information as defined below (6), and will be evaluated against a transparent set of criteria set forth below (5)
    c. The decision to admit a new service will be taken by an independent Health-RI Access Services Board; a decision to deny this admission will be well documented with a clear motivation
    d. After acceptance of the service, it will receive the “a Health-RI service” statu
    e. 
    On a regular basis, but at a minimum in a 2-year cycle, Health-RI will review the Health-RI services portfolio together with the independent Health-RI services board
     
  5. Quality criteria for Health-RI services
    a. Services meet the needs of a broad group of users in the Health-RI domain, or fill a clear gap in the innovation process in the Health-RI domain
    b. 
    Services are sustainable for a reasonably foreseeable horizon. Users should be able to trust in a service’s  existence, maintenance and longevity. If a service must nevertheless be phased out,, the service provider supports the migration to a reasonable alternative to its best possible capabilities.
    c. Services cannot have an absolute lock-in; a practical and feasible exit strategy towards alternative solutions should be available
    d. Services are required to have a life cycle management strategy in place, ensuring regular review and updates
    e. At application for admission, service contributors provide references on adoption and use of the service in the community
    f. Contributors have a process in place to address user questions to the level that can typically be expected for the kind of service
    g. Contributors are able to specify the service levels to be expected by users, and can indicate how they expect to meet those levels
     

    Additional criteria for software services

    h. Services using sensitive data comply with the relevant legislation (AVG/GDPR, …)
    i. Contributors need to be able to close relevant agreements with its users (Service Level Agreement or similar)
    j. Contributors cannot request exclusivity on the data being stored, processed or analysed by the service; data control remains with the users
    k. Contributors state how and where data will be stored and processed
    l. Contributors have the technical and organizational control measures in place to secure the data protection, availability, and consistency to a level in accordance with the current state of art
    m. Services dealing with sensitive or regulated data include auditing capabilities to track and trace critical data modifications
    n. Contributors ensure accessibility and interoperability using community-adopted data standards
    o. Contributors include stable and well-documented API's ensuring sustainable interoperability with external tools
    p. Contributors publish a clear software license, transparent criteria for use, and relevant additional policies on their website
     
  6. Criteria for providing Information to users
    a. The contributor provides and maintains up-to-date general information on, or via, the Health-RI platform (General Description, User group, Terms of Use, How to get started, …)
    b. The contributor provides and maintains the relevant licensing information
    c. The contributor provides and maintains the contact details for user support d. The contributor provides information on any costs associated to the use of the service and the charging model, and will not  make any unreasonable changes to this cost model in the foreseeable future
    e.
     The contributor acknowledges the relevant parties involved in developing the service

Services are evaluated against these criteria in a periodic review cycle (typically bi-annual), or if incidents (security breaches, user complaints, etc.) give rise to such a review. The review will be prepared by the Health-RI support team and is reviewed by the independent Health-RI Service Board who will re-evaluate the service against the criteria outlined above. This may lead to the decision to expel or suspend the service from the Health-RI platform.

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