Community

Community

Our aim is to facilitate the participation of users during the development of our concepts. In doing so, we flexibly incorporate the views, needs and priorities of the communities into our development processes. In concrete terms, this means organizing community workshops and workshop series on our infrastructure projects, regular training courses tailored to the needs of specific communities, and open feedback and evaluation rounds by users.


Interaction, networking and exchange with clinical research, epidemiological and public health communities are core activities of NFDI4Health. Only through the active participation of users concepts can be developed that meet the requirements of health-related reserach data management. Our activities are based on a participatory understanding of community engagement. The goal of our activities is to enter into dialog with all relevant communities.

Background

Personal health data are mainly collected and analyzed by physicians, epidemiologists, public health researchers, and biometricians. Researchers in epidemiology, medical biometry, medical informatics, public health, health services research, social medicine, and nutritional epidemiology, as well as researchers in clinical trials, thus form a large part of our user community. Many of them have a dual role as data holders and data users. Typically, data collections are stored in decentralized, autonomous data infrastructures that are intended to remain decentralized but need to be integrated into a common framework for centralized search and access.

In order to identify, concretize and address the specific needs of health research, NFDI4Health involves key stakeholders in this field as participants. To promote the acceptance and use of our developed concepts, NFDI4Health already involved the user community during the application phase and asked for the requirements and needs of the user community in a survey and discussed the objective of the application in a community workshop. NFDI4Health continues this engagement and actively involves the user community in the following areas of the project: Governance, project calls, training and dissemination activities for different target groups, and feedback loops. In terms of content, this is ensured in particular by Task Areas TA4 and TA5.

 

Events

Citizen Science

NFDI4Health is currently setting up four projects in the field of citizen science. The goal is to reduce fears of data use through intensive exchange with interested citizens and to demonstrate the opportunities it offers. Further projects are to follow.

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Training und Development

The Data Train cross-disciplinary training program, a core element of the NFDI4Health training concept, aims to build the next generation of data-literate researchers in the biomedical sciences.

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Community Workshops

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Mapping of the data competence landscape

A wide variety of data literacy training programs exist with diverse formats, topics of focus, and target groups. The aim of the workshop was to increase the visibility of these and to create an initial overview of the offerings.

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Application forms for access to research data

  • What could application systems of the future look like?

  • What requirements must an application portal fulfill?

  • What meta-information must be captured for federated data analysis?

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White Paper on Improving Record Linkage in Germany

  • Start of the open review process

  • How can the white paper be supplemented?

  • Legal consideration and conclusions

Read More (in German)
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