Background of the CBB-project in Belgium

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Introduction

Quality of care registries and epidemiological surveillances play an important role in today’s public health policy. Over the past 30 years, more than 160 registries started to collect data in Belgian hospitals, laboratories, private medical practices… These registries are known for their heterogeneous data collection methods and information models, low transparency and high administrative burden. Often, the same information is recorded multiple times by the data providers, resulting in a high costs for data providers. Some of the registries lack privacy and security measures. Furthermore, most data providers receive no or little return on information. At the end of 2012, a round table conference was organized with regard to the further computerization of Belgian health care. More than 300 persons from the Belgian health care sector aided the set-up of a concrete action plan for eHealth for 5 years: the Roadmap eHealth 2013-2018. The 5 Pillars of this roadmap are: 1) the development of the exchange of information by health care providers based on a common architecture, 2) the increasing involvement of the patient and his/her knowledge of eHealth, 3) the creation of a reference terminology, 4) the realization of administrative simplification and efficiency, and 5) the introduction of a flexible and transparent governance structure in which all competent authorities and stakeholders are involved. Based on these pillars, 20 concrete, measurable objectives were agreed upon, of which one concerns the scientific registries: Action Point 18.

Action Point 18: Inventory and consolidation of registries (2013 version)

The department “healthdata.be” within the Scientific Institute of Public Health (WIV-ISP), funded by the National Institute for Health and Disability Insurance (INAMI-RIZIV), was created to coordinate the execution of Action point 18 of the “Action plan eHealth 2013-2018” which prioritizes the consolidation and standardization of the scientific registries. The healthdata.be team started with a detailed survey with all known government sponsored registries. Information of more than 160 projects were published in the website http://www.healthstat.be. With this survey, more than 8000 variables requested by researches were inventoried.

Analysis of these variables identified three broad groups of variables: 1) signalitics (gender, age, qualifications, ...), 2) information generally recorded by health care professionals for continuity of care or their administration, and 3) variables that serve a specific research question (see Figure below). For each group, a need for standardization was identified. Standardization of the group of "signalitics" was considered by the healthdata.be team as a "Quick win", whereas standardization of the group of clinical variables was considered as the real "Big win".

The Dutch Clinical Building Block's

In the beginning of 2015, the healthdata.be team had several informal workshops with members of the NICTIZ and NFU project "Zorginformatiebouwstenen" (Clinical Building Blocks, CBBs). Their detailed data specifications of medical concepts without thereby implicitly choosing a given technical standard, reference model, or platform, was found to be extremely interesting for the standardization of most of the clinical variables requested by researchers managing a patient registry. Aware that the current set of CBBs will not cover all requested clinical information, the healthdata.be team considers a successful implementation of the CBBs as a "Big win" in the standardization of the scientific data collections.

HD CBB.png

Action Point 18: Inventory and consolidation of registries (2015 version)

Convinced that the CBB approach would be a good method to standardize the many variables that feed the many patient registries in Belgium, the healthdata.be team presented this CBB approach during the workshops (Q2 2015) for the actualization of the “Action plan eHealth 2013-2018”. Consequently, the Belgian adaptation of the CBBs was approved by the experts and the political steering committee and thus published in version 2.0 of the “Action plan eHealth 2013-2018”.

Nr. Action Timing
18.11 A Belgian adaptation is carried out for each available specialism transcending and technically neutral NFU-NICTIZ Clinical Building Block, which - after validation - will be published in a publicly accessible central digital catalogue. Before end Q1 2016
18.12 All recurrent policy supporting scientific data collections will be composed with the available Belgian Clinical Building Blocks.
* All new data collections Starting from Q1 2016
* All existing data collections Before end Q4 2017
18.13 The List of Values of the Clinical Building Blocks in all recurrent policy supporting scientific data collections will be composed with SNOMED-CT concepts.
* All new data collections Starting from Q1 2016
* All existing data collections Before end Q4 2017

Conclusion

References

  • Interministrial Conference Public Health (14.10.2015) Action point 18: Inventory and Consolidation of registries. in: Plan eHealth 2013-2018: v2.0, Brussels, Belgium [1] (Nl.) [2] (Fr.)