WP4: Community & Communication: on management, dissemination and patient involvement
The Patient Advisory Board gives this research network the opportunity to get feedback on its research as well as insight in how patients experience having an IMD or hematologic malignancy.
The PAR will support the network with the dissemination of information and communication to the wider patient community and will engage with the appropriate patient communities for disease specific activities and projects.
Since Target-to-B! spans a wide range of diseases several patient organizations are involved in the Patient Advisory Board: Vasculitis Stichting, Spierziekten Nederland, Nationale Vereniging van Sjögren Patiënten, Nationale vereniging voor LUPUS, APS, MCTD en Sclerodermie , Hematon and Netwerk Nederland voor Pemphigus en Pemfigoīd.
Patient representatives are provided with adequate training to be able to fully utilize their individual skills and qualities needed for a fruitful collaboration.
A meeting for patients, family and patient organizations will be organized together with the PAR every 2 years to explain the research and discuss obtained findings crossing disease borders.
Patient advisory board
Community & Communication: on management, dissemination and patient involvement
Next to its scientific and clinical ambition, the consortium also aims to develop an outreach program for multiple stakeholders such as patients, students, clinicians and clinical fellows as well as pharmaceutical industry and the general public.
Work package 4 is focussed on communication methods to exchange knowledge within and beyond the consortium including patients and general public. This WP is supported by a stakeholder committee and a patient-advisory board.
This website will serve as a place to disseminate our research findings and research agenda to a broader public, including patients. Besides the website we also distribute a newsletter which we use as an outreach tool for instance for upcoming events, introduction of researchers and project updates.
The WP4 objectives are:
- Disseminating research and findings to relevant stakeholders
- Engage with other immunology-oriented consortia to accelerate national and international research initiatives
- Develop and provide strategies to ensure efficient communication within and beyond the consortium
- Ensure data valorisation and exploitation of results