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The 3rd CLL HORIZONS Conference, hosted by the CLL Advocates Network, was held in Edinburgh, Scotland from 19-21 September 2019. This two-and-a-half-day event was held during The 2019 International Workshop on CLL (iwCLL), to share latest clinical advances in medicine and care to inform advocacy initiatives, creating opportunities for additional networking, learning and development of collaborative initiatives between global CLL clinical and advocacy communities.
The Conference brought together 52 participants from 25 countries all over the world – among them global advocates, patient groups and healthcare professionals supporting people with a diagnosis of chronic lymphocytic leukaemia. The event enabled the sharing of real-life experience of living with a diagnosis of CLL and how to support patients.
The conference started with two optional Foundation Learning Sessions where delegates could choose between a CLL Basics Session (“CLL 101”, aimed at preparing advocates with understanding of basic CLL biology, patient challenges and current issues to prepare them for more involved discussion, clinical, scientific and advocacy sessions during the conference) and a Social Media Session (“Connecting Through Social Media“, explaining how to use social media to the best of patient advocacy groups´ advantage, how to develop and maintain on-line support groups, and how to work with patient run groups online).
After the formal opening, the programme continued with a workshop on “Living with a Diagnosis of CLL and CLL Empowerment Programmes” (Session#1) and one on “Barriers to Good Care under a Patient’s Control informative” (Session#2).
The dinner at Novotel Edinburgh provided the opportunity to further learn, share, and grow in a relaxed atmosphere.
Day 2 started with a medical session entitled “Appropriate Testing: what, when and why”, followed by an advocacy session that shed light on “Access to Tests” (Session#3). In the course of the afternoon session “CLLAN – Moving Forward”, the CLL Advocates Network Steering Committee (SC) reported on current activities, membership, SC development and discussed potential activities to support advocate groups and SC expansion. The presentations on Organisational sustainability set the scene of organisational requirements for start-up and established patient groups. How do we keep our successful organisations functioning long-term? What are the priorities? How do we best support our communities?
The “UK CLL Forum & CLL Advocates Network shared plenary session” brought patient advocates and clinical experts together to explore the current state of the art in CLL treatment and care. How are different countries achieving optimal therapy (or are they), what are the gaps, knowns and unknowns? How can we work together to improve this?
This session was followed by a medical session on “Optimal Therapy for CLL in 2019”, addressing questions such as “Can we achieve this in the UK?” and “What Do We Still Need to Learn?” besides shedding light on current gaps in knowledge and care.
The “Advocacy in Action” session at the end of day 2 (Session #5) was composed of the following two sub-sessions:
- “Advocacy – Access to drugs: Patient Organisation Role & Perspective”, presenting realistic ways PO´s can influence decisions and where they can´t, introducing benefits of collaboration across communities and showcasing examples of successful lobbying campaigns amongst patient organisation.
- Evidence Based Advocacy – Including the True Patient Voice, showcasing examples within international community of surveys and how they are used to influence planning & policy.
The day ended with an iwCLL Reception at Edinburgh Castle and dinner at Novotel, and again provided the opportunity to exchange ideas and experiences, and network in an informal setting.
Day 3 started with a medical session on “Clinical Trial Strategies and Ongoing Complications of CLL” (Sessions #6 and #7), that were followed by advocacy sessions focusing on the questions “What’s important to advocates?” and “How can we work together to improve the system?”. One special highlight was a UK patient´s personal experience („The good cancer is not so good“).
The program continued with a Wrap up discussion where delegates where encouraged to ask themselves what they are taking back to implement on the local level and what their plans are in moving forward.
After a moving tribute to Chris Dwyer (a patient advocate who spent years offering hope, encouragement and strength to fellow patients with CLL, and finally lost the battle dying at the age of 73), the best poster was awarded and the Conference was formally closed.
On behalf of the organizers, we want to thank all speakers for their excellent presentations during this fruitful conference. A big thank you also goes to the delegates for their active participation and for contributing to stimulating and engaging discussions!
We look forward to seeing you all again at the next CLL Horizons!
Your CLL Advocates Network Steering Committee