'Informed patients have better outcomes'. This was the main message kicking off and summarising the Lymphoma Coalition Global Summit 2018 held in Prague this July. I spent two full days listening to many inspirational stories, experiences and projects as well as contributing to discussions and sharing Lymphoma Action’s updates, approach to supporting people affected by lymphoma, developing various services, ideas and dealing with common challenges.
We had many lively discussions between people representing and supporting people affected by lymphoma in 30 countries across the world from Australia, South Africa, China, Japan, India, most of Europe, Canada and the USA.
The lymphoma coalition is a great example of how, by working together and sharing good practice, things can change. As a result, the coalition is also expanding its regional presence. In addition to Lymphoma Coalition Europe, which was set up a couple of years ago, the Lymphoma Coalition Asia Pacific was launched.
On the first day, 30 participants shared and discussed areas of good practice on a number of topics in order to learn from each other’s experience. The topics covered were influence and change, patient education for newly diagnosed, fundraising, survivorship programmes, developing services.
The next section focussed on Patient-Centric Care – a best practice. We listened to a presentation and had a discussion around Patient Reported Outcomes (PROMS) and how different health systems were making use of this to understand the impact of cancer beyond the disease itself and to provide an holistic approach to addressing patient’s needs. In the UK this is the key focus of the recovery package and the holistic needs assessment.
We spent the next session with Jeff Boss, former US Navy Seal, now leadership speaker, highlighting ways to remove roadblocks in thought and action in order to get things done no matter what the size of the organisation is. This is important for Lymphoma Coalition members as many are run by a few volunteers right up to the more established organisations such us Lymphoma Action.
The Lymphoma Coalition Europe group spent a very interactive afternoon focussing on lobbying and advocacy for improvements in lymphoma treatment, care and outcomes in Europe. We identified the main issues and priorities in Europe, as well as learning from regional case studies. We also spent time developing skills around how to bring systematic change. This focussed on a simple and straightforward approach to public affairs, lobbying and key messaging around important problems.
The second day started with representatives from the key pharmaceutical companies participating in the conference. Lymphoma Coalition Europe focussed on how to define value for treatments. This looked at patient preferences and perspectives in lymphoma diagnosis, treatment and care. The session got very technical around the various ways European healthcare system evaluate and decide access to new treatments. We discussed the Magnitude of Clinical Benefit Scale (MCBS) and how patient experience data support clinical and cost-effectiveness decisions. The final session of the morning looked at Community Advisory Boards (CABs) across Europe and learning from other disease areas how this might work for lymphoma.
The afternoon discussions and presentations were around combination therapy treatments for lymphoma and the need for information, support and other relevant solutions for patients.
These discussions will be written up and distributed across the lymphoma coalition network.