For patients undergoing cancer treatment, it can feel as though your individuality and control has been lost. The processes taking you through diagnosis and treatment move you from one place, one setting and one clinician after another, like a parcel. This sense of loss of identity is amplified if you have a different language or culture.
The system is effective and efficient but seldom captures the actual sense of living in this body that is experiencing all this.
If patients have the opportunity to communicate how they are actually feeling in a simple way that is immediately available to the treating clinicians, this is a powerful thing. You could say that they just need to tell their doctor. However, the clinical engagement is often based around blood tests, pathology, imaging and the technical elements which don’t capture the patient’s experience.
Imagine a situation where you – as a patient – have in your hand your phone, with an app where you can record your pain levels, your sleep (or lack of), your anxiety about your prognosis or the financial implications of that. Knowing that when you record these observations, they will flow to your clinical care team. At very least, at your next clinic appointment, they would have a clear picture of your wellbeing. Even better if there are system alerts generated when your responses show a concerning deterioration – triggering a call from a nurse.
I am aware that you, as an audience, are listening to all this and thinking – “Dream on!” “She doesn’t know how hard it is (and how expensive it is) to achieve.”
Actually, I do – after 30 years of building and implementing systems across government and private sector, I know that it is possible. And necessary. Because it matters to people with cancer.