Reach supported agreements

datE: 29-01-2024 Status: ADOPTED

 

The Health-RI ecosystem can be compared to a game in which the participants jointly determine the rules of the game. In this comparison, the Health-RI wiki can be seen as the rule book, which describes how we jointly make the Health-RI ecosystem work.

Various types of appointments appear in the Health-RI wiki, such as:

• Agreements that concern the regional hub with names

• Agreements that only affect the Health-RI hub

• Agreements that are laid down in legislation

• Agreements on standards, processes and techniques to be applied

• ….

These agreements will be established in different ways, but can be achieved according to a jointly agreed process. The RACI model is used in this process to make a recognizable distinction between the different participants in this process.

The process starts from the Health-RI plateau planning 2028. Each result is determined in advance

• Which working groups will work on this, or will be responsible for the result;

• Whether and how the result should be determined, or who is accountable for the result;

• How the result is consulted and informed with all stakeholders involved.

Within the Health-RI we distinguish different working groups.

Working groups from the regional hubs, with expertise in the areas

• ELSI

• FAIR DI

• Helpdesk & Services

• Biobanks & Collections

• Chief architects

  • Clinical data

  • Omics data

  • Imaging data

  • Find & Request

  • Analysis

Working groups from the obstacle removal process, which are working on

• Joint why, national principles

• Communication and information

• Integrated legislation and regulations

• National control register

• System for unique coupling key

• Capture data once for multiple use

• Clear data assessment and request

• Management, issuance and use of the data

As soon as a result from the Health-RI plateau planning 2028 has been determined who is Accountable and Responsible, the elaboration can begin:

1. Responsible working group

   1. Develops first definition of Result,

   2. Determines which Working Groups should be further involved,

   3. Develops first version of storylines, which must be supported by results

   4. Develops first definition of Solution Direction/Agreement

2. Small committee of all working groups involved refines the initial draft

3. Further elaboration in separate working groups

4. Small committee of all working groups involved summarizes the total

5. Accountable directors are informed

6. Agreement - solution is added to Wiki and consulted

7. Feedback is being processed

8. Agreement - solution is determined by Accountable directors for the Health-RI ecosystem

Steps #3 to #5 can be completed iteratively several times.

If steps #6 and #7 show that large-scale adjustments are required, you will also return to step #2.

With this method, Health-RI demonstrates that value is attached to the input and feedback of stakeholders. It emphasizes the commitment to a joint effort to develop and improve the health data infrastructure for research and innovation, with the aim of creating the National Health Data Infrastructure for Research, Policy and Innovation, which meets the needs and requirements of all involved parties.