When you become a patient, especially after a serious diagnosis, you often feel completely lost. You may not understand how diagnoses work, what treatments are available, or even what a clinical trial is – let alone whether one might be an option for you. Suddenly, you realise you know nothing. So, what happens next?

The struggle to understand medical information

A doctor or nurse will usually try to explain. They mean well, of course, but within seconds, you may feel overwhelmed or confused. Whether they speak your native language or not, it can still feel like they’re speaking a foreign one. What you really need is clear, trustworthy information – explained as simply as if to a six-year-old. Unfortunately, healthcare often doesn’t provide that.

Why clear communication in healthcare matters

That’s why I often say: yes, we need to educate patients – but we also need to understand that the moment someone becomes a patient, especially after a diagnosis like cancer, they are 100% dependent on their doctor and the healthcare system. In many ways, they are as vulnerable as a newborn. After some time, many patients do start to learn and understand, especially if they want to. But from the start, healthcare should offer proper guidance and reliable information in plain language.

The value of participating in clinical trials

If you take part in a clinical trial, you’re not only helping yourself – you’re also contributing to science, to other patients, and to society. Participating in a trial is always valuable. In a trial, you help generate what is known as clinical data. This data helps researchers and industry see how well a new treatment works and whether it should be made available to others.

Ask about clinical trials – always

You are the source of that data. While you may not own it legally, morally it belongs to you. So, you have a right to understand how your data is being used, how it is protected, and what conclusions are drawn from it. This is beautifully explained in a simple video created by PHUSE, called Data Privacy and Data Sharing in Clinical Trials – What Is Clinical Data?

My advice: please watch it. And if your doctor ever says there are no more standard treatments available, ask about clinical trials. There is always a trial somewhere – if not in your country, then perhaps in another. Patient advocates can support you in finding one.

Peter Kapitein
Patient Advocate Inspire2Live