The PriCare.Net research and surveillance consortium is a collaborative network of healthcare providers who use the Ref.Care software to document the medical care of people with refugee experience in initial reception centres and collective accommodation facilities in Germany, as well as academic institutions and governmental stakeholders such as regional authorities and the Robert Koch Institute. PriCare.Net provides the necessary consortium structure to enable the collaborative use of Ref.Care treatment data—anonymised and aggregated—for surveillance and research purposes.
The Ref.Care software was developed at Heidelberg University Hospital within the Section Health Equity Studies & Migration. It is a documentation software specifically tailored to the context of initial reception centres and collective accommodation facilities for refugees.
Origin of PriCare.Net
The PriCare.Net research consortium emerged from the project Pri.Care – Health and primary‐care sentinel surveillance in reception‐ and accommodation‐centres for asylum‐seekers in Germany (funding reference: ZMV I 1 – 25 16 FSB 415), which was funded by the German Federal Ministry of Health from 2016 to 2020
Pri.Care addressed the heterogeneous, often paper-based, and fragmented nature of healthcare provision for people with refugee experience in reception facilities across Germany. To improve quality of medical documentation and care, a tailored digital infrastructure was developed within the Section Health Equity Studies & Migration at Heidelberg University Hospital.
The Ref.Care software enables straightforward, data protection–compliant documentation of medical consultations and facilitates the exchange of patient data between institutions. In addition, a set of indicators was developed to allow anonymised analysis of routine care data, enabling – for the first time – its aggregation across different reception facilities and regions as well as joint publications. The PriCare.Net research consortium was established as the organisational and structural framework to enable this project.
Following the successful completion of the Pri.Care project, Ref.Care was transferred into routine use in several federal states.
20 consortium partners
50 facilities
800.000 documented medical encounters
Consortium Bodies
The lead of the consortium is held by the consortium spokesperson, Prof. Dr. Kayvan Bozorgmehr, M.Sc., and a deputy consortium lead. The deputy consortium lead is appointed by the consortium leadership and confirmed by the consortium meeting. The responsibilities of the consortium lead include representing the consortium externally without legally binding authority for individual partners, coordinating public relations activities, communicating research findings, steering strategic decisions, organising consortium meetings, and coordinating overarching research, funding, and project activities.
The Consortium Assembly is held annually and consists of representatives of all Consortium Partners as well as an Advisory Board, with voting rights reserved exclusively for Consortium Partners. The Consortium Assembly serves to discuss and align key surveillance and research activities within the consortium and ensures that the interests of healthcare providers are adequately represented. It elects the members of the Data Use and Access Committee (DUAC), advises on fundamental consortium matters, and issues recommendations to the Consortium Lead and the DUAC. The Consortium Assembly is convened by the Consortium Lead or upon request by multiple Consortium Partners.
The Data Use and Access Committee (DUAC) consists of four members, including the Consortium Lead, and is composed in equal parts of medical and academic representatives. The DUAC reviews incoming proposals for statistical analyses and research projects and issues non-binding recommendations within a defined timeframe, while final decision-making authority remains with the individual Consortium Partners. Members are elected by the Consortium Assembly for a term of two years. They are accountable to the Consortium Assembly and report regularly on submitted proposals and issued recommendations.
The Advisory Board consists of representatives from the German Federal Ministry of Health, the Robert Koch Institute, and other relevant public authorities, and does not hold voting rights. Membership is by invitation of the Consortium Lead and is confirmed by the Consortium Assembly. The Advisory Board generally meets once per year following the Consortium Assembly and may be convened additionally as needed. Its role is to provide substantive input and propose recommendations on surveillance activities and further research questions within the consortium.