In 2019, IJPDS issued a call for Population Data Centre Profile articles. We are very pleased to announce that we’re re-opening this call to allow further articles to be submitted!

Having a published description of the data centre is an excellent way to document the work, raise awareness, share expertise and act as the seminal paper for future reference.

A population data centre is defined in this context as an information environment providing access to linked datasets at person-level from multiple routine data sources, with explicit approaches to how this linkage is done, and how data are managed and safeguarded for the purposes of service-delivery, research or both.

New submissions need to be:

  • From data centres who did not previously submit an article
  • Data centres who have a significant update in their operational model since their previous article
  • Data centres who wish to cover a different aspect of their work to significantly supplement their previous article

The paper must cover the research elements that underpin and inform the operating models, not be simply descriptive. This will include areas such as literature reviewed, learning from established centres, methodological and validation testing, consultations with stakeholders, etc. It should include a section on lessons learned.

The following is a guideline structure:
Background/Introduction: Description of the reasons/rationale/impetus for the data centre to be established
Approach: how the centre was set up, including the underpinning research that informed its development. Here are some sub-sections not all of which will apply to every centre:

Sub-section

Description

Population setting

Population base for the data centre

Operating model

Repository, distributed custodial databases, or combination

Architecture and information technology

The platform, technologies used, access to types of storage and compute

Governance, legislation and management

Overriding governance and data protection issues that need to be accommodated. How the data centre is governed and under whose auspices it sits

Consent model

Requirement for individual consent in setting up the centre. Opt-in vs opt-out

Privacy by design

Main privacy and security measures taken to ensure participant protection, and security of the data environment

Data linkage

Predominant linkage technique (deterministic, probabilistic, etc.), and how links are stored (e.g. chain of links or look-up tables)

Data linkage keys

How the keys that enable the Data Centre to link person level data are generated including who generates them and how frequently they are updated

Data sources

Listing of the main sources of datasets included, their volume and coverage, and their frequency of update.

Data access

The procedure to access data, including any ethics and other approvals required. Also, whether data are released externally or accessible only within a data safe haven

Noteworthy outputs

2-3 examples of how the data have been used

Discussion with areas for improvement and future work
Conclusions with future work

The deadline for this special issue is 30th June 2022.