Let’s Make the Point on Glioblastoma Navigator
Almost four months have now passed since the launch of Glioblastoma Navigator and it’s time to try to understand what worked, what didn’t work and possibly correct the trajectory.
For those who have never heard of it, Glioblastoma Navigator is a SuperMind, a system designed for patients, caregivers, doctors and researchers. Patients can anonymously enter their location, glioma data, treatment history and outcomes. The system provides recommendations for specialist centres, information on clinical trials and personalized treatment recommendations. It also allows patients to view their own glioma history and share the necessary information with doctors. For clinicians and researchers, the system collects data on a larger scale, offers the ability to provide case-specific opinions, and helps recruit suitable patients for clinical trials. The system accessible at the navigator.glioblastoma.it link and in the services section of this site will be able to use machine learning algorithms to discover correlations and improve future standards of care.
A system like Glioblastoma Navigator produces results if used by many people and on a larger scale than in a single hospital or specialized centre, otherwise it is of little use.
To date I have to say in no uncertain terms that the project is not producing the expected results even though everyone was enthusiastic in words when it was announced, when the guides on its use were prepared and when it was presented at conferences of specialists, patients and caregivers.
To date there are only 80 subscribers and unfortunately among these there are also fake users who register to advertise drugs without medical prescriptions. I can’t even imagine how it’s possible to even think about doing these things but that’s the sad reality. These users are blocked and the content they insert is deleted but obviously this involves a commitment and a cost. Only 2 of the members are specialists. Here, too, I expected much greater interest.
Unfortunately, there are only 34 patient profiles entered, so we are at 40% of registered users. The vast majority come from Italy as was natural to expect given that our site, despite being multilingual, is a site developed in Italy but there are also some patients from abroad, which justifies the effort to maintain the multilingual service.
Of the patient profiles entered, only 32% are complete, therefore containing information on diagnosis, surgical treatments, radiotherapy, other therapies, scans and also status updates. These complete profiles can be used effectively for statistical analysis and therefore to find useful correlations in this sort of virtual experimentation.
There is a further 18% of incomplete profiles, 20% of profiles containing only the diagnosis and the remaining 30% of profiles have only the location. Even assuming that incomplete profiles will be completed sooner or later, we arrive at 50% of usable profiles. We set ourselves the goal of reaching a thousand usable profiles but moving at this rate, it could take tens of years to achieve this goal and this, you understand, is not acceptable.
Considering that the development of the system cost a lot both in terms of development costs and maintenance costs, it is important to understand if it is possible to improve the service and, if so, how or if it is better to consider the project failed and therefore suspend the service and dedicate the available resources to other activities.
I therefore ask all of you to comment this article by inserting useful suggestions on how to improve the system or in any case feedback on the potential reasons for these poor results so far. Having collected your feedback, we will decide the future of the project by the end of September and after the next meeting of the scientific committee of the volunteer organisation.
We thank you in advance for your precious contribution. A hug.