Special Issue call requirements

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.

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 also include a section on lessons learned.

 

Word limit:

4,000 words with the option to include up to 4 tables/figures in total.

 

Guideline structure:

Background/Introduction: Description of the reasons/rationale/impetus for the data centre to be established. Whether it is a standalone institute or part of another organisation, along with its main source(s) of funding.

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 Whether there was a 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 source datasets included, with 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 noteworthy examples of how the data have been used



Discussion: with areas for improvement and future work

Conclusions: with future work

 

The first deadline for this Special Issue is: 31st May 2019
How to Submit: Please submit all manuscripts via the IJPDS website

 

If you’re unsure if your manuscript is appropriate for the call, or if you have any other queries about the special issue, please email us: contact@ijpds.org