What is science without data? Not true science, that’s for sure!
Data can be so many different things and can be collected in many different ways, by observation, by testing, by interviewing, and by experimenting just to name a few. Obviously, larger amounts of data gives more accurate results, which is why the BETTER project has the ambition to gather data from across international borders. This is especially important in the cases of researching rare diseases, because the rareness provides limited data gathered in each hospital. Data is both important and valuable and must be protected. We don’t want sensitive data being stolen and sold ending up falling into the wrong hands. On the other hand, some transparency and data sharing can benefit further research, if the right security measures are in place.

Like any other scientific project, BETTER is built on data. Being not just a healthcare research project, but also a project in data science and artificial intelligence. The BETTER Project is nothing but data! Psychology data, biology data down to DNA level, data science, cybersecurity, and artificial intelligence. Due to the scientific nature of BETTER and the wish for transparency, we have updated our website and added a new tab on our website for technical documentation. Which will be updated gradually during the project with non-sensitive data. The sensitive data will be kept under lock and key!

“Motivated people always find a way. Unmotivated people always find a way not to.” - Ed Latimore

When you are motivated about something the work seems easier, because you enjoy the work or the results are important to you. And motivation is one of the themes in a series of interviews back from the BETTER project meeting in Stresa in April.

In the interview you get to meet the actual experts doing the hard work, not just media trained marketing people, and hear them talk about what motivates them to be in this project. Raw and unfiltered, as most interviews were done in one single take without a lot of preparation time.

A reoccurring answer is the urge to help people. They want to make lives better. To save lives! Another repeated answer is the excitement and fascination of developing new technology. The motivated is driven by internal factors, by the work itself and the end goal of doing good in the world.

The BETTER project consists of a whole team of motivated experts working together towards the same goal. Respect each others’ expertise and how they can work together. That’s the beauty of these international EU projects, they bring together the right people. And the results? They can benefit us all.

We got funding in BETTER for 42 months – that is three and a half years. This is almost half a year longer than the usual average duration of a RIA or IA project. Sometimes compression of times like things to happen in 2 years instead of 4 works well but sometimes it kills this extra time that one has to dedicate to create value or at least make an honest attempt for this to happen.

In research as we organise it in the context of European Framework Programme for Research and Technological Development since some time now, we pose importance on the quantification of what happens: people we contacted, events we organised, community members we ‘attracted’ to our lines of engagement activities. Same also for papers we prepared and published, demonstrations we carried out; one can continue with the list for long enough. This quantification is supposed to also affect the impact of our project and, as result, the societal value.

One may of course wonder what if Tim Berners Lee (at that time of March 1989 or May 1990 still not yet knighted) had cared for KPIs to keep his head and his World Wide Web project above water by means of indicators that might, in retrospect, seem unimportant.

BETTER was conceived not only as a good project – it was, as it names reveals, intended to be a better project than all others we have been part of. This means that we committed to create value not only in the big things we aim to build but also on the small or less important ones that eventually are as important as the ambitious goals we aim to achieve.

Co-creation is the main tool we use for this: this means that we try to develop a team-based approach for all things that matter and will help us build a common legacy that we shall then be able to exploit afterwards.

Keeping it personal and trying to engage in several levels is not easy and costs time and sometimes it creates unnecessary frictions. The project has now entered its nine month since December that we started and we have come well along the first deliverables, the first milestones, the completion of tasks, the facing of interdependencies between Work packages and Tasks; for sure we now also know better what we might have done in some other (or better) way.

Kierkegaard is attributed a quote that holds not only for life but also for projects: they can only be understood backwards - but they must be experienced forwards.

Apart from the technical infrastructures we build in the project, we plan for acquiring and securing funding to operate several of the project activities after its completion. This does not mean to acquire new projects but find the means to support what we are now building. One source that academic institutions are used to acquire funding from relates to public funding but our ambition is to go beyond this and try also access for venture capital and private investors.

As this challenge was not connected to any KPIs, we are free to seek for and build greatness!

Adamantios Koumpis, University Hospital Cologne

The overall digitalization of the world creates new opportunities for scientists to create data-driven applications in many areas: marketing, transportation, healthcare, climate, aerospace, and even education, or the arts. Among those fields, the healthcare branch has obtained particular attention from the European Union. An example is the Horizon Europe programme, which focuses on six clusters, including health. Indeed, despite the important efforts engaged in healthcare digitalization, many challenges are still open and of high interest for the scientific community, but also for city, country, and European stakeholders. The main one resides in making healthcare centers interoperable to let their knowledge and data circulate in a secure way. A practical outcome of this interoperability is to better understand diseases, notably rare disease because they remain largely not understood due to a wide variety of symptoms and signs which vary from one disease to another, but also from one patient to another. Moreover, rare diseases have a low prevalence (it affects less than 5 citizens per 10 000) and 80% of them have a genetic cause, which complicates their understanding. For all these reasons, medical expertise is rare, knowledge is scarce and pinpoint the right diagnosis is very difficult and takes time.

The management of healthcare data brings several technical challenges: heterogeneity, large amounts of data, privacy, little normalization, etc. Indeed, healthcare centers generate and store huge amounts of data, of very varied forms, such as clinical reports, patient history, treatments, genome and exome (3 billion nucleotides make up the human genome), etc. Also, they are autonomous and independent actors, thus they do not coordinate when creating data, leading to high heterogeneity. This is why medical practitioners crucially need healthcare systems for integrating their datasets in-house and across institutions, possibly across countries, with which they did not cooperate during the data creation. This is the goal of the BETTER project!