The EBMT Patient Engagement taskforce promotes a new strategy of active participation of patients and caregivers within the Society's activities.
The taskforce is a multi-disciplinary team of clinicians, researchers, other healthcare professionals, patients, caregivers, donors, and other stakeholders involved in transplantation and cell therapy.
Patient Engagement Taskforce Core Team
Scroll down the page to view the list of individual members.
Patients, caregivers, donors and health care professionals (HCPs) have complementary strengths and a common goal: optimal care and therapy outcomes.
The taskforce’s objective is to offer a platform to promote interaction between patients/caregivers and healthcare providers and show the added value of such an approach.
This initiative should lead to new common integrated pathways within EBMT to improve the whole transplantation and cell therapy process.
EBMT Patient Engagement Survey
The objective of this anonymous survey is to understand the current point of view of all EBMT stakeholders (health care providers, industry staff, government officials, patients, donors and caregivers) regarding the engagement of patients in HCT and cell therapy data-collection and research.
Because patient engagement can occur at two levels, this survey consists of two parts:
- When patients provide information about themselves to understand the effect of their cell therapy / transplantation on different aspects of their own life, as research participants.
- When patients are actively involved in the research process to decide on research priorities, research design and the implications of the results, as part of the research team.
The results will be used to shape future projects involving patient engagement within the EBMT.
We need your input whether you are a patient or caregiver yourself, a healthcare provider or working in a different sector!
Thank you for participating and forwarding this message to your colleagues and patients!
Other upcoming projects
- EBMT Patient Reported Outcome Registry Project
- EBMT 2021 - Special Session on Patient Engagement in Research
- Provide patient-specific educational material (FAQ webpage, webinars, etc.)
- Promote collaboration with members of the Patient Advocacy Committee
- Increase patient/caregiver/donor contact database
The task force meets on a regular basis with engaged representatives from multiple stakeholder groups to discuss current projects.
A collaboration with the CIBMTR and other patient engagement initiatives is also ongoing to promote international synergy.