How Can we Improve Glioblastoma Navigator

As promised in the article Let’s Make the Point on Glioblastoma Navigator, we have collected comments and indications and are ready to tell how we would like to proceed.

To date, from the article, the number of registered users and profiles inserted has grown by 50% even if we are still very far from the objectives we had set ourselves.

From the comments received, both on the article and on social media, as well as privately, the project is liked and there is strong encouragement to continue on this path.

However, we must be objective in analyzing the situation and understanding how to proceed if we want the system to become truly useful and contribute to the fight against glioblastoma and other brain tumors.

First of all, it is important to get the message across that even caregivers of patients who are no longer with us can enter their clinical histories. This message had not been clear enough. The more clinical histories there are, the more useful this sort of virtual trial becomes.

Some had problems registering, perhaps because the email to confirm their identity ended up in junk mail. However, this tells us that it is important to simplify registration while maintaining the required level of security.

Many people do not read the privacy policy and terms of use and therefore are concerned about privacy aspects. This, however, tells us that it is important to work in such a way as to allow people who are worried about these aspects and do not have time to read the documents relating to privacy and terms of use that would reassure them to still feel reassured.

Other people find it difficult to find the different forms to enter information. This tells us that it is important to simplify the entire data entry process, perhaps using a metaphor we are all used to, that of online questionnaires.

Finally, information on the existence of this system must be publicized more and better thanks to word of mouth and the greater involvement of specialists. Just think that in Italy almost five thousand people get sick every year. If only one in five entered their data, in a very short time we would have sufficient data to develop a first predictive model.

Technology comes to our aid in all of this. We have just put into operation a new Gliobot chatbot based on the most advanced artificial intelligence where you can ask anything about glioblastoma, about the site, about clinical trials, about specialized centers in Italy. Try it! Simply select the brain-shaped GBM icon, which is also the Glioblastoma.IT ODV logo, at the bottom right of each page or on the online services page. This system will continue to improve and will be integrated into Glioblastoma Navigator which will transform into a sort of chatGPT dedicated to glioblastoma which we will call glioGPT which will help simplify interactions with the user. In practice Glioblastoma Navigator will also function as a kind of advisor for patients, caregivers and specialists.

As for the rest, each patient will have to provide only their email upon registration and will receive a link to connect to and a password. He will only have to keep this email for any subsequent interaction and possibly pass it to the caregiver and will be able to generate a read-only link from the application to pass to the doctor for easy viewing of the medical history. No more problems and worries about privacy so as to remove the barriers we were talking about before.

Finally, for each interaction, the initial one and subsequent ones in which updates are needed, the user will simply have to fill out a guided questionnaire, without having to imagine where to insert the information. And it will also be possible to enter part of the information in a textual and open way: we will use artificial intelligence to extract structured and useful information for the development of models from the free text entered by the user.

All these developments will take time and obviously for those who have already entered the information we will find a way to recover the data already entered. We hope to have the new application available by mid-December, therefore five years after Emanuele left us. I think he would be very proud to know what we are doing in his name to fight this terrible disease. A hug to all of you.