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CAR-T Meeting 2026 | The role of social media in a patient’s CAR-T journey
Thomas Jezequel, MSc, Nantes University Hospital, Nantes, France, discusses the role of social media in a patient’s CAR T-cell therapy journey, noting that it can offer opportunities to access online support groups and connect with other patients undergoing this therapy. However, he also highlights that it is associated with challenges, as patients may encounter data and content that can discourage them or cause distress. Nurses can circumvent this by routinely asking patients about their social media use, fostering critical thinking, and guiding them to reliable content. This interview took place at the EBMT-EHA 8th European CAR T-cell Meeting, held in Palma de Mallorca, Spain.
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Transcript
Today we talked about social media and actually we have to note that 70% of the world’s population has a mobile phone and 73% is connected through the internet. When it comes to high-income countries, for example Europe, between 77% and 79% is connected through social media. So the question is no longer, is it good or not to use social media? The question is how can we support our patients and their families in this new environment? Because this is creating a new communication space around health, but also around treatment, CAR-T, of course...
Today we talked about social media and actually we have to note that 70% of the world’s population has a mobile phone and 73% is connected through the internet. When it comes to high-income countries, for example Europe, between 77% and 79% is connected through social media. So the question is no longer, is it good or not to use social media? The question is how can we support our patients and their families in this new environment? Because this is creating a new communication space around health, but also around treatment, CAR-T, of course. So that’s why it’s very important right now.
And indeed, it brings opportunities for patients, especially because it allows them to have access to online support groups and they can look for peer support, emotional support, connection, but it brings also a couple of challenges. Sometimes patients reported that when they go on social media it makes them feel discouraged from their own journey. For example, when they hear about someone else’s death or disease progression, or when they are looking for unsolicited content like survival curves or the raw reality of treatment, it can be very challenging for them.
So as a nurse, we probably have a moderate role, you know, because we are very close to them during a long moment during their pathway. And we probably can have these three tips…I’d like to share these three tips. The first is to ask them routinely, “”Did you use social media? What did you see on social media? And did you see something wrong?”” And next time you can take some screenshots and we can discuss it. And we can also teach them to have critical thinking about the content they see, for example, who is speaking, what for, with what evidence, and we have to integrate this like teaching program routinely, you know. And the last advice is to guide our patients, for example, we can give them a short list of content, or like the CAR-T Center’s website, but also scientific society websites, and finally, Patients Association, which is a major actor in this topic.
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