An Immune-Image roundtable discussion: How can we improve an optimal patient journey of those undergoing whole body PET imaging/immune cell imaging?
The Immune-Image project develops methods for visualizing the immune response before, during and after immunotherapy by means of whole-body PET imaging/immune cell imaging. This provides a supportive approach for the improvement of immunotherapies and personalised treatment aimed at treating patients with cancer, inflammatory diseases, and other diseases in which the immune system plays a role.
During the Immune-Image annual meeting in Barcelona, ttopstart organised a roundtable discussion moderated by Bert Windhorst with the aim to discuss how an optimal patient journey of those undergoing whole body PET imaging/immune cell imaging can be improved/guaranteed. Several experts with a background in research, pharma, ethics, data and legislation were invited to the table to provide their perspective.
How can we improve an optimal patient journey?
To be able to answer the question how we can improve an optimal patient journey for patients undergoing whole body PET imaging/immune cell imaging, the following questions were addressed during the discussion:
- How is informed consent explained to the patients?
- How are research outcomes comprehensible and frequently shared with patients?
- How are patients informed about data security and how can we improve this?
- How can data sharing be explained to the patient?
The roundtable discussion provided many insights on how to deal with informed consent, sharing research outcomes and data security. When patients take part in research studies and undergo PET or immune imaging, it is important to manage expectations and inform the patient about the procedures and use of data in advance. The provided information should be complete, easy to understand and concise. In practice this remains a challenge as there seems to be a discrepancy between what information legally is required to be provided and what the patients need and want to know. Another challenge that was discussed is the difference between countries in the EU regarding informed consent and data regulation. To improve an optimal patient journey for future research, the Immune-Image patient panel will further discuss how the informed consent procedure can be optimized.