The Immune Image Patient Panel
Managing expectations: an insight in the perspective of patients, patient advocates and caregivers on the ideal setup of the Immune-Image patient panel
Adding an extra perspective: the patients
One important aspect of large European consortia projects such as Immune-Image which should not be forgotten is the impact that these projects can have on the lives of patients. The goal of the Immune-Image project is to improve the monitoring of immunotherapies by developing new immunotracers and thereby help the clinicians to identify the best therapy for the individual patient dealing with cancer, inflammatory diseases and other diseases where the immune system plays a role. Here, integration of the patient perspectives along all phases of research is crucial to optimize the benefit for the patient.
A patient panel will be created in the coming months to involve patients in the research process and to inform patients about immune cell imaging. As the clinical researchers in work package 6 work most closely to the patient, a meeting was facilitated to discuss expectations from their side. To align the needs of researchers with the expectations of patients, it was decided to co-design the setup of the patient panel. Therefore, a survey was launched capturing the needs, demands and expectations of patients, advocates and caregivers regarding the Immune-Image patient panel.
Outcomes: expectations of a patient panel
The survey was designed by ttopstart and evaluated by clinical researchers and a patient before it was distributed through the Immune-Image website and the ECPC and WP6 network. This approach resulted in 26 responses, providing the consortium with valuable insights on how to set up a patient panel. Mainly patients and patient advocates responded, most of them with previous experience in patient panel-related activities, who addressed that the patient panel could add value to the Immune-Image project by means of 1) providing a patient perspective to the researchers 2) raising awareness about the project 3) ensuring that the study design gives maximum benefit to the patients. The patient panel could consist of two task forces, separated by indication (oncology and inflammatory diseases) with approximately 5 members per task force. The preference is 2 to 3 meetings per year, with the option to meet both online or physically. According to half of the respondents, it might be relevant for patient panel members to have experience in or background knowledge on immunotherapy when participating in the patient panel. Most of the respondents indicated they would like to stay involved/updated on the Immune-Image patient panel.
Over the upcoming period, the patient panel will be composed based on the outcomes of the patient panel survey and in consultation with the clinical researchers. Oncology and inflammatory disease patients and advocates from the ECPC network and other patient organizations will be invited to participate in the immune image patient panel. To be continued!
Are you interested in participating in the patient panel? Send an email to email@example.com for more information.