40 years ago, almost no child diagnosed with leukaemia survived. Now it’s the opposite in that almost all of them are cured and that’s thanks to research and clinical trials. Without clinical trials, there is no scientific progress and without scientific progress, there is no progress made in the field of treatment. When the latter happens, patients either die or see no improvement in their quality of life. 

We all know this and yet there are still too few patients included in clinical trials. This happens for many reasons, one of them being that information about clinical trials is often shared using overcomplicated language or by physicians who do not take enough time to explain what the patient can expect when they sign up for a trial. 

This can and must be done better and the good news is that there are organisations who are starting to bring about change. PHUSE, the global healthcare data science community, “is committed to sharing ideas, tools and standards with our community around data, statistical and reporting technologies to advance the future of life sciences”.

Inspire2Live was introduced to PHUSE as part of our working group on data and we were pleasantly surprised to learn that clinical trials can be explained effectively in simple terms. PHUSE is currently working on several videos to explain more about data privacy and data sharing in clinical trials. They already have a short introduction video which tells you what you can expect from them in the near future. And make sure you take a look at their video about the importance of clinical trials. What do you think? Want to know more? Follow PHUSE! 

Peter Kapitein
Patient Advocate Inspire2Live