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CAR-T Meeting 2021 | The importance of partnering with patient organizations

Ananda Plate, LL.B, MSc, Myeloma Patients Europe, Brussels, Belgium, outlines the importance of partnering with patient organizations in research projects, focusing on Horizon 2020 projects such as CARAMBA. Patient organizations provide relevant patient and caregiver input to projects. In CARAMBA, Myeloma Patients Europe plays an important role in capturing and evaluating what patients and carers value, the patients’ experience while undergoing CAR-T therapy as well as patients’ expectations. This interview took place during the 3rd European CAR T-cell Meeting.

Transcript (edited for clarity)

What I spoke about is really the gaps that patient engagement can address in a project like CARAMBA Horizon 2020 project, but also when speaking about IMI projects. I think one of the main conclusions was that utilizing patient organizations for the sole purpose of communicating, disseminating, or even ticking a box when submitting a proposal is a bit of a missed opportunity. So I try to provide the example of CARAMBA and what the key insights of an organization like MPE can be when collaborating in a consortium like CARAMBA...

What I spoke about is really the gaps that patient engagement can address in a project like CARAMBA Horizon 2020 project, but also when speaking about IMI projects. I think one of the main conclusions was that utilizing patient organizations for the sole purpose of communicating, disseminating, or even ticking a box when submitting a proposal is a bit of a missed opportunity. So I try to provide the example of CARAMBA and what the key insights of an organization like MPE can be when collaborating in a consortium like CARAMBA.

It mainly focused on three points. One was around helping to capture what patients value. At the moment we don’t know at what moment in time myeloma patients value CAR-T the most and the preferences of patients aren’t static, they change over time. So carrying out proper patient preference studies that identify the subgroups of patients that most value CAR-T is very important. The same for carers. That was the first point.

The second one was more around, not so much around the preferences, which you can express previous to your therapy or undergoing the therapy, but more about what patients experience while undergoing CAR-T therapy and how important it is to capture quality of life of patients that undergo CAR-T, around how they experience the long and short term risks and there’s long and short term benefits. Also, not only how quality of life should be measured, what tools should be used, but also when in time. When is the best moment in time to actually capture quality of life to ensure that you’re really getting out all the information that you want about what they’re experiencing? All of that data obviously helps to run a clinical trial in a proper way, understanding what patients experience.

Then, the third point I covered and that’s the last one was around informing and managing expectations of patients before undergoing CAR-T therapy. Because at the moment there really many open questions still, mainly in myeloma. I know in other disease areas it is a bit more advanced, but in myeloma, there are very high expectations from patient population. There’s a bit of a hype. The thing is that in myeloma the data is very promising, but we don’t know what the long-term outcomes are and whether it’s curative or not. At the moment, we don’t have that data so we need to really ensure that patients and their families know what they’re getting into, what the options around accessing CAR-T is, what is going to happen while undergoing CAR-T and what the outcomes are that they can expect. That was what I covered in my talk.

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Disclosures

Myeloma Patients Europe receives funding from most of the pharmaceutical companies developing myeloma and AL amyloidosis drugs. Ananda Plate has no personal disclosures.