By Gerard van Oortmerssen
Since the development of the first computers shortly after World War II, we have witnessed multiple waves of innovation, from the use of personal computers to the internet, the world wide web, the advent of mobile phones and social media. We are connected to virtually everybody everywhere, always. This became especially apparent in the period of lock-down due to the COVID pandemic. Visiting or going to school or the office was not possible, but we could visit each other and attend virtual meetings instead of being there in person.
But is it right to call it a revolution? A revolution is a radical sudden and pervasive change which affects our lives and society. An overthrow of the present system, which is replaced by a new reality. The special character of the digital revolution, however, is that this revolution is not a one-time change, but a continuing and even accelerating process! You ain’t seen nothing yet!
The newest development is what we call Artificial Intelligence (AI). Scientists have been working on this already for many years but now the results are impressive, and the new possibilities thanks to AI become available to the broad public as well.
We live in a truly interesting time!
The latest wave of digital revolution matters a lot for sarcoma patients
For most of us the diagnosis of a sarcoma is a double shock. You’ve got cancer, a life-threatening disease, quite a life changing event. But it is a kind of tumor most people have never heard of. You don’t know anyone with the disease. Where can you find information? Where can you find fellow patients with the same disease, who can tell you what it means and with whom you can share experiences? Well, the answer is: the Internet. This is where you can find information, this is where you can find peers. You don’t have to be alone!
My personal experience
This is what happened to me in 2010 after I got my GIST diagnosis. I looked for information and found the Life Raft Group and the Facebook Group of GIST Support International. I was amazed to find so many patients from all over the world, in a virtual space to exchange their experiences and their emotions. They share with each other their feelings, their fears and anxieties. They give details about the development of their disease, their experiences with the medical system, treatments and medication. Sometimes it looks like patients share their entire medical record. What are the side effects of the medication, and what is their effect on the daily life of the patients? Sometimes patients report that they found strategies to cope with the side effects. Strategies that might be tried by other patients as well. These discussions are important for other patients, to learn about the experiences of other patients. But it took me a lot of time to read and find interesting posts.
Artificial Intelligence can help to delve the gold
Discussions of patients on Internet are like a gold mine. But how can we delve the gold nuggets? With my professional background in research in computer science I knew that it should be possible to use smart methods like artificial intelligence to find the interesting data in the discussions. I started to collaborate with university researchers. We used natural language processing and machine learning techniques. We also needed the help of some of my fellow GIST patients to teach the computer what to look for, for example, what a side effect is. I obtained funding for a PhD project that was recently successfully completed at Leiden University in collaboration with Prof. Hans Gelderblom, a well-known GIST specialist. The results, side effects of GIST medicines and strategies of patients to deal with the side effects, were published in the medical literature. There is growing interest among specialists for these results. They reflect side effects as experienced by the patients. These may differ from the official results as determined during clinical trials, they are patient reported outcomes.
My dream is to build a community platform for sarcoma patients worldwide
I have described what is possible to do on a basis of a Facebook Group for GIST patents. There are similar groups for other subtypes of sarcoma. My dream is to build a platform for all sarcoma patients worldwide. Where every patient can interact with their peers in their own language and exchange information and support each other. This would also be a source for “real world data” of patients that could help us to discuss with sarcoma specialists what is really important for patients. It would empower us, sarcoma patients, and help improve the quality of life of sarcoma patients.
Photo by Uli Deck
Bio:
Back in the 1970s, Gerard van Oortmerssen did his PhD thesis on data science. In 1991, he was appointed as Director of the Computer Science Institute Amsterdam, and presided in this capacity also the European Research Consortium for Informatics for five years. Gerard is a GIST patient and Co-Chair of the SPAGN Board.