We have been around the subject of motivation in an earlier blog post. Today, we turn our attention to the expectations of the BETTER Project. Expected impacts was one of the questions in a series of interviews from the project meeting in Stresa, Italy, back in April.

In the interviews we hear some of the people behind BETTER talk about their expected impacts or outcomes of the project. Depending on their individual field of expertise, they have different expectations. Some focus on the development of technology, while others focus on how the project can make a positive impact for the patients they work with.

One thing they all agree on: they all expect that the BETTER Project will have a positive impact on the future. Watch the full interview answers in the video to hear their answers.

From September 12th to 14th, 2024, in Belgrade Serbia, both IMGGE and Datrix participated in the Caring for Rare 2024 conference, a unique event on rare diseases that brought together stakeholders from across Central and Eastern Europe.

During the conference, the BETTER team contributed to the session titled "Empowering Rare Diseases through Data", which convened experts and advocates working to leverage data and technology to advance rare disease research and care. This session highlighted the potential for international collaboration and emphasized the critical need for patient involvement in data sharing. The discussion focused on the transformative role of data in advancing the understanding of molecular pathways, improving diagnosis, and driving innovative treatments for rare diseases. We also had the opportunity to discuss the European Health Data Space (EHDS) and present BETTER and its mission, which aims to create secure, privacy-preserving infrastructures for health data sharing.

Additionally, the conference provided a valuable opportunity to visit the IMGGE facilities in Belgrade. As a governmental institute, IMGGE is dedicated to acquiring new knowledge in molecular genetics, biomedicine, and biotechnology, with the goal of improving quality of life. Within the BETTER project, IMGGE plays a crucial role in Use Case 1, contributing their strong expertise in genomics and rare disease modeling. During the visit, we further discussed BETTER's long-term vision and explored opportunities to strengthen synergies in innovation projects.

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