We were delighted that Stephen Scowcroft, Head of Business Development, was able to represent Lymphoma Action and participate in the first European Lymphoma Community Advisory Board (CAB) last week in Brussels.
CABs are groups of patient advocates and expert patients/carers who use their professional and/or personal knowledge and expertise to discuss and advise on the latest developments, challenges and issues related to medical treatments and procedures under development in their disease area.
While each member brings their own personal experience and learning to their role on the CAB, they also represent the wider community of their disease area. This means knowing about the experiences and perspectives of other patients/carers or groups of patients even if those experiences do not fully match or reflect their own. This is especially important in lymphoma because of the complexity and variety of the 60+ types and variations in diagnosis, treatment and aftercare across Europe.
The CAB meets with various pharmaceutical organisations, research and regulatory authorities in order to discuss key areas, collaborate on projects and represent the wider experience of people affected by lymphoma. The kind of topics that the meeting covered this time was patient priorities, quality of life issues, treatment side/after effects, patient outreach, education, feedback on clinical trials or research studies and their design, criteria for participation, informed consent forms and processes, compassionate use programmes, retention, and results reporting.
By being involved, Lymphoma Action, and the people affected by lymphoma that we are there for are able to:
- Influence the research and development pipeline for lymphoma (including CLL) treatments so that it better meets the needs of patients and carers.
- Increase access to, and reimbursement of lymphoma (including CLL) treatments across Europe. Improve awareness and understanding of lymphoma (including CLL), both nationally and across Europe, within the healthcare system, academia, industry and EU institutions, and among the general public.
- Create a louder voice for the lymphoma and CLL patient community.
- Recruit, train and support more patient advocates and experts to work within individual European countries and across the region.
15 April 2019