Within the PriCare.Net consortium, members – including healthcare facilities and researchers – collaborate to improve the evidence base for healthcare provision for people with refugee experience.
This is achieved through a surveillance module, i.e. the systematic analysis of healthcare utilisation data combined with timely feedback to the participating facilities, and through research, that investigates specific scientific questions in a targeted manner.
Health Indicators
For surveillance and research purposes, the PriCare.Net consortium uses health indicators—standardised metrics derived from routine care data that enable comparisons over time and across participating facilities.
Currently, 50 indicators are implemented, covering a broad range of domains. These indicators are grouped into four main areas: Population and morbidity, e.g. number of individuals treated, most common countries of origin, frequency of specific diseases, multimorbidity; Care processes, e.g. number of consultations and referrals; Quality of care, e.g. vaccination coverage, potentially inappropriate antibiotic prescribing; and early detection of outbreaks, i.e. syndromic surveillance (e.g. clusters of gastrointestinal or respiratory symptoms).
Distributed Computing & Data Protection
A core methodological approach within PriCare.Net is distributed computing: instead of centrally pooling raw data, anonymised indicators are calculated locally at each participating site. To enable this, the PriCare.Net team at the Heidelberg University Hospital develops analysis scripts based on a set of agreed health indicators. These scripts are executed locally by designated surveillance officers at each facility. As a result, only anonymised, facility-level indicators are shared, and sensitive patient-level data never leave the respective site. For cross-site research questions, additional safeguards—such as anonymisation, pseudonymisation, and data aggregation—are applied to ensure that no inferences can be made about specific facilities. The PriCare.Net data protection concept has received a positive vote from the TMF – Technology and Methods Platform for Networked Medical Research e.V.
Database
The database of the PriCare.Net research consortium is extensive: to date, PriCare.Net has captured information on more than 150.000 treated individuals and over 800.000 documented medical encounters from approximately 50 participating facilities. This broad data base enables PriCare.Net consortium members and interested partner organisations to conduct robust research on real-world healthcare provision.
Join us – collaboration drives impactful research!
Facilities providing care for people with refugee experience and participating as PriCare.Net Consortium Partners can trigger the surveillance module – i.e. local analysis of their own care data – on a monthly basis at the push of a button. This enables the identification of patterns and trends in health needs and service provision, allowing timely and flexible responses.
Members of the PriCare.Net consortium can propose new indicators or modifications to existing ones at any time if current metrics do not adequately address their surveillance or research questions. Proposals are reviewed by the Data Use and Access Committee (DUAC) and subsequently presented to the Consortium Assembly. Upon approval, proposed changes are implemented in the Ref.Care database, enabling new research questions to be addressed. This ensures that indicators remain responsive to evolving care needs and support practice-relevant research.
Research using PriCare.Net data can be conducted either through the analysis of existing Ref.Care data or via primary data collection using the PriCare.Net mailing list. For the use of existing data, research proposals are submitted for review by the Data Use and Access Committee. Upon approval, the requesting consortium member is provided with pseudonymised, retrospective indicator data from PriCare.Net facilities. For data collection via the PriCare.Net mailing list the research question and survey materials are submitted, reviewed by the DUAC, and – upon approval – distributed to participating facilities. Responses may optionally be pseudonymously linked to Ref.Care data to provide additional context.
If a publication based on Ref.Care data is planned, the proposal must be formally submitted and is circulated to all consortium members via email. This allows other facilities to provide comments or raise objections within a defined timeframe and to participate actively, for example as consortium co-authors.
PriCare.Net provides an interdisciplinary environment in which practice and research come together. The network enables the development of innovative and practice-relevant research questions that respond directly to real-world healthcare needs. Even if individual resources are insufficient to carry out a research project independently, members are encouraged to put forward their ideas, topics, and questions to the consortium. This facilitates the identification of research partners and enables active participation in shaping PriCare.Net research.