Collaboration with patient organizations
The purpose of Genomic Medicine Sweden is to improve the diagnosis, treatment and monitoring of a range of diseases in order to ensure that patients all over the country receive better, more equitable care.
Designing patient-centred care is crucial for the successful implementation of precision medicine. By involving patient organisations, the patients´ perspectives can be considered early in the process, and together we can develop improved diagnostics and care. Important issues include informed consent, access to precision diagnostics and treatment, training and data-sharing principles.
Training and the dissemination if information are important if we are to create understanding of the implications of precision medicine and the importance of data sharing. In collaboration with the patient organizations the Network Against Cancer and Rare Diseases Sweden, we arrange national training activities and dialogues with and for representatives of patients and next of kin, as well as healthcare professionals, policymakers and others. GMS also participates in Vision Zero Cancer’s effort in the continued training of organizations representing patients and next of kin at the Regional Cancer Centres (RCCs) located around Sweden.
The GMS Steering Committee includes representatives from the Network Against Cancer and Rare Diseases Sweden. As the GMS initiative develops, additional patient organizations will also be involved in the organization’s work.