YouTube videos about clinical trials for children with cancer fall short

2021-09-14

Parents of children with cancer sometimes look for information about clinical trials on the internet. We know very little about what they find. In a recent study, researchers from Uppsala University’s Centre for research ethics & bioethics analyse the content, quality and reliability of YouTube videos about such clinical trials. It turns out potential benefits are largely overrepresented. While risks are mentioned in passing or not at all. 

Tove Godskesen
Tove Godskesen

YouTube has become one of the most significant social media with almost 2 million users per month and a interactive educational platform. Despite this, the quality of videos of clinical trials for children with cancer is low. The researchers determined that YouTube videos are poor sources of information if you are looking for accurate information about clinical trials for paediatric cancer.

“Aside from native speakers, most parents in Sweden know enough English to watch videos or read information in English. At least they can get help to translate a 5-minute video about a clinical trial. Health care professionals should pay attention to what parents find when they look for information on the internet, and recognise the possibilities of using YouTube as a tool themselves,” says Tove Godskesen, RN and associate professor at Uppsala University, one of the authors of an article recently published in Information, Communication & Society.

All research comes with inherent uncertainties. In the early stages of drug development the purpose is primarily to give small doses to see how the body and, in paediatric cancer, the tumour reacts. But also to map potential side-effects. All clinical trials have uncertainties about whether the current standard-of-care is better than the drug that is being tested in the clinical trial or not.

The videos analysed by the researchers were often shorter than six minutes, from cancer centres and foundations or childrens hospitals in the US or UK. Half of them were about experimental studies in early stages. Most of them with a positive and hopeful tone. Often, the information offered was imbalanced and partial, without explanations of ethical uncertainties.

According to the authors, YouTube should be considered as an important pedagogic tool that can play a key role in offering high-quality information about clinical trials for children. But the information should take into account the different levels of understanding of medical information and have good visual quality to provide patients and their caregivers with accurate information. Perhaps especially about clinical trials for children with cancers.

Tove Godskesen, Sara Frygner Holm, Anna T. Höglund & Stefan Eriksson (2021) YouTube as a source of information on clinical trials for paediatric cancer, Information, Communication & Society, DOI: 10.1080/1369118X.2021.1974515

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