Projects & Programs overview
Implementation of the code of conduct for health research
A collaboration between Health-RI, COREON, NFU, STZ, FMS, NVVP and other partners to provide tools and guidelines to implement COREON’s code of conduct for health research into practice.
COREON’s code of conduct for health research provides researchers and institutions with a translation of laws and regulations into norms for health research. FMS, NFU, NVVP, Health-RI, and STZ endorse the code of conduct as an important step towards better and responsible use of human tissue and health data in health research. Therefore, they decided to work together on the implementation.
Because of this code of conduct, researchers know how they can handle human tissue samples and data responsibly. However, researchers sometimes struggle with the translation of these norms into practice. This increases the risk of diverging implementation of the code of conduct in different institutions, thereby hindering multicenter research.
This collaboration aims to prevent this divergence by updating existing and working out new practical guidance and tools, together with answers to frequently asked questions that will be shared through the ELSI Servicedesk.
After consultation, it was decided to focus on a set of most urgent topics which can complement and contribute to the work of the Obstakel-Verwijdertraject to arrive at an integrated approach to foster data sharing for research and innovation.
|
Topic |
Main partners |
Main end product(s) |
|
DPIA (data protection impact assessments) |
Health-RI & COREON |
Data flow standardized tool, example privacy assessment template and guidance. |
|
DMP (data management plans) |
Health-RI, COREON, STZ |
DMP guidelines and potentially an example template. |
|
Secondary use |
NFU, COREON, STZ, NVVP, FMS |
Adjusted guidelines secondary use for both NFU and STZ hospitals. |
|
Flow chart consent procedures secondary use |
Health-RI (ELSI Servicedesk) |
Adjusted flow chart consent procedures secondary use on ELSI Servicedesk |
|
Pseudonymization |
SURF |
Adjusted pseudonymization matrix and guidelines. |
|
Anticipating on future activities (mainly re-use of data/tissue) |
Health-RI & COREON |
To be determined. |
Other topics of the code of conduct will not be taken up actively in this collaboration. However, examples of practical tools or guidelines which could be integrated into the guidance that may be of use for (other) researchers are welcomed (contact details below).
The project started January 2023 and will run for at least 12-18 months. First results are expected after the Summer.
Organisation
The working group consists of Susanne Rebers, Anne-Lotte Beckers (both Health-RI), Martin Boeckhout (COREON/Lygature), Han Boter, Kim Karsenberg (both NFU), Wim Timens (FMS/NVVP), Marlies Bennema (FMS), Esther Pallast & Zwanetta van Zijl (both contact person for STZ).
More information
Please send an email to susanne.rebers@health-ri.nl