EBMT-EHA CAR-T 2019 | How can HCPs and organizations help involve patients undergoing CAR T-cell therapy

Lymphoma Coalition develops a lot of resources for capacity building for our base and organizations. And we published last year what was an update of a previous report on CAR T-cell therapy where we were bringing all these topics not only to explain very well what the therapy is about, the different indications where the therapy is being approved or it’s working well currently. And also the trials, how the science is changing because we have learned in these days, it’s already moving ahead. We are talking about bringing to previous lines of treatments and to other diseases as multiple myeloma and other things.

In the context of lymphoma, we are doing at Lymphoma Coalition, a lot of efforts to understand also how the information that you offer timely to a patient can even modify or impact their outcomes. For example, last year, at ASH, we published and presented an abstract, a co-relationship between the outcomes and the informed. There is a good report published before, better informed patients have better outcomes and as part of our global patients survey that we launch every two years and we update that information, we were collecting to know what information works well, what patients expect to receive as information, even whom, from whom they want to receive the information.

And they want to receive the information from their doctors, from their healthcare providers and also from nurses and also from patient organizations. But we shouldn’t deny that they can come also to websites and to Google to try to understand. So it’s our duty, it’s our responsibility to bring available useful resources, reliable resources based on the evidence and even to build evidence to know how that information will impact the patient outcomes and the patient confidence, which at the end is the base of the relationship of doctors and patients.