ASH 2024 | An update on the valuable work of the Lymphoma Coalition

The Lymphoma Coalition, as I mentioned before, is a network of patient organizations. We are coming with a new strategy, every five years we renovate. The strategy for the Lymphoma Coalition is more or less in the same direction, improving lymphoma outcomes, improving the life of all impacted by lymphoma. And in that all, I include all our audiences, not only the member organizations, but also the patients themselves as ultimate beneficiaries, but also the healthcare professionals, the scientific societies, you know, everyone involved. 

And our work is collaborative. We partner with different stakeholders and we have two pillars. One is information and the other is advocacy. 

Everything we do is based on research on that Global Patient Survey that I mentioned before because there is a need to support the patient perspective on evidence, on data. And that’s where most of what we do rely on that data. But that data is important when you can translate it in a way that can be integrated into the different things. So currently, we are supporting scientific societies, for instance, in the update of the clinical guidelines, not to miss any dimension of care. So guidelines could be more than an algorithm of diagnosis, treatment, and beyond. We want to expand that view of the guidelines and we will be producing also patient-friendly versions of the guidelines in lymphoma. 

We are involved in several multi-stakeholder initiatives with the EBMT registry, for instance, in Europe, to define the patient-reported outcomes collection. We are involved in the validation of a new tool to measure the quality of life through patient-reported outcomes for T-cell engagers, including CAR-T, but also including bispecifics. As the Lymphoma Coalition, we are doing qualitative research on the patient experience on CAR T-cell therapy and bispecifics as well. We publish our data, we are about to publish a white paper on shared decision-making, incorporating all these factors and knowledge we got through the Global Patient Survey. 

I want to enhance an area that is a focus of my work, that is helping to build the leadership of the patients’ advocates. It’s important in the lymphoma community to count on people well-equipped. The patient voice is being increasingly called to be part of decision-making, for instance, in health technology assessment, in regulatory assessments, to have conversations with payers so we can really help with the availability of the treatments in the market in real life. But of course, all these are demanding. It’s demanding work. We need to be well-equipped, well-trained, and also have the confidence to participate in these, to take on the burden of that hard work. And so we have programs to help with the leadership of the lymphoma experts in that area. We run community advisory boards that allow us to have very honest, transparent conversations, for instance, in the context of academia to improve clinical practice. Last year, we had a very successful one exploring graft-versus-host disease clinical practice improvements. Recently, there was a publication in The Lancet with the outputs of that community advisory board. 

And this is only a small part of what we are doing. But if you want to know more, I invite you to explore the Lymphoma Coalition website, www.lymphomacoalition.org. Our new site is going to be refreshed, so very soon we will come with a new site as well, where hopefully you will navigate easier and find all our information. 

Last year we published a report also on the white paper on the psychological impact of lymphomas. And that’s also important to understand how to put in context that kind of fog that patients may have from the psychological point of view and doctors and nurses can help with that. We are contributing also with nurses’ educational programs. So we provide insights very, very early to the education and learning programs for nurses. In talking about early involvement, we are also involved early in the review, well, in the shape of the protocol of clinical trials in the lymphoma space.

This transcript is AI-generated. While we strive for accuracy, please verify this copy with the video.