It is three years ago today that I started chemotherapy for a B-cell plasmablastair non Hodgkin cd20 negative. More details you can find here. You can also read there why I publish much less on this blog than I would like.
The treatment turned me from a cancer patient into a chemo patient as I seem unable to recover from the therapy.
What I learned during this whole process is the importance of information and the fact that as a patient – especially when your condition does not fit into a standard category – you have to maintain a strong position towards your care providers. You have to force them into a participatory attitude.
I suffered from a rather rare kind of cancer and had a partially experimental treatment. Unfortunately, the hospital that treated me did not have an EHR. Lab results and images are stored digitally, but all the rest is classic paper work. And amazingly little was recorded about the outcome of the treatment. One would expect that my reactions to the treatment, very outspoken, but also quite exceptional, were recorded in detail to serve a research purpose. I still don’t understand why that has not been the case.
What if they had? What if all my data, including my own observations would have been stored digitally? Mine is a rare case, one of very few where the cancer manifested itself the way it did, one of the very few that got this kind of treatment but also one of the very few with such an extreme and long lasting reaction to that treatment. If available digitally it could have been linked to other similar rare cases, creating a pool that is worth researching. Especially if we want to move towards personalised medicine, individual stories will be very important to guide those developments. The value is to be found in linking the information and exploring it.
At the same time it would create a source of information that could serve not only care providers but also the patients involved.
Immediately it becomes clear where the focus should be in the development of digital medicine. Standards, ontologies, interoperability; access to information; access to and participation in one’s own care path.
Lodewijk Bos
