R&D, health policy and the imminent needs of cancer patients do not stop with the pandemic. Powerful patient advocacy, patient engagement and patient input are more important than ever. CLLAN is currently implementing a series of digital workgroups that shall function as a digital alternative/accompaniment to the traditional CLL Horizons in-person capacity building model, providing topical CLL sessions as webinars rather than in an in-person CLL Horizons 2020. Some of them will be CLL-specific, while others will be open to the wider blood cancer advocacy community.
“Never has there been a time when we needed those collaborations and needed to build those collaborations with the clinical community more.” Nick York
“You guys (referring to patient advocates) are the experts really. This is a peer discussion!” Dr. Renata Walewska
The first non-CLL specific workshop was on “Developing collaboration between patient groups and clinical groups – working together to improve patient outcomes” and was held on 30 Sept 2020 as part of our Blood Cancer Awareness Month (BCAM) initiatives. It was an engaging experience with an international panel consisting of 4 experienced representatives of the advocacy community and 2 UK-based clinicians who all shared great insights and best-practice examples of successful collaboration between these two groups.
Besides general examples of collaboration on the national (e.g. primary care education, spot leukaemia campaign, national BCMA activities) and international level (such as patient advocacy tracks in medical congresses, real world evidence production, patient advocates´ involvement in research to ensure a research that is closer to the patients´ needs and the creation of networks of excellence, etc.), the expert advocates presented special examples of collaboration during COVID-era. For example, the Israeli group “Flute of Light” offers a patient transportation service to help patients reach the hospital and get their regular check-ups despite COVID-19 restrictions and obstacles related to these. Other groups offer regular webinars to inform their members in need while F2F meetings are not possible. Prof. Chris Fegan shared interesting insights from survey findings of patients’ challenges and COVID outcomes. The individual presentations were followed by an interesting Q&A session.
The panellists of this first webinar were:
- Nick York (Leukaemia Care, UK)
- Giora Sharf (Flute of Light, Israel)
- Pierre Aumont (SILLC, France)
- Felice Bombaci (AIL, Italy)
- Prof. Christopher Fegan (Director – School of Medicine – Cardiff University, UK)
- Dr. Renata Walewska (Haematologist – Royal Bournemouth Hospital; chair of the UK CLL Forum, UK)
The meeting was hosted & moderated by CLLAN Steering Committee members Dr. Brian Koffman (CLL Society, USA) and Nick York (Leukaemia Care, UK, acting as co-host).
Please click here to watch the recording of this very first CLLAN webinar.
We would like to thank the following companies for supporting this initiative:
A big thank you goes to all speakers who accepted our invite for kindly sharing their experience!
Further digital workshops will come as a continuation of CLL Horizons 2019 workshop sessions. Details will be announced as they become available.