We are getting back into work after a well deserved holiday.

In 2024 we got the BETTER Project off to a great start, both on the technical side and the communication side.

• Technical progress: The PADME software has been deployed among partners and the next step is to have it deployed at the clinical sites. A lot of work has also gone into data FAIRication and data handling, in order to work across institutions and have the same data structure regarding the same research topic.
• Webinars: We have hosted our first webinars to explore the subjects of federated learning and researching rare diseases. Events & Conferences: We have been to several events and conferences, which has lead us to new insights and exciting collaborations.

With such a great year in 2024, our goals for 2025 is first and foremost to continue what we have successfully started, and then we keep on keeping on!

• We have plenty of exciting techical developments planned for 2025: Our Use Case workshop at Terrassa in November was a great success and allowed us to plan our next technical steps in-person. In 2025 we are focusing on practical results moving the project from theory into practice!
• And we also have more dissemination and communications activities in the pipe line: Webinars, academic papers, work shops, and events.

It’s both productive and rewarding to work together with so many different people across country borders and expertises! We are appreciative for the EU HORIZON projects for giving us this opportunity!

All in all, 2024 was a great and productive year, and we believe that 2025 will be even better!

Tech provider with a background as a biologist, and now director at the AI and IT development company Noosware. Stratos Arampatzis is an important part of the BETTER Project with both his own knowledge and experience along with the rest of the team at Noosware.

Watch his interview to hear more about Stratos’s role, his motivation and expectations for the BETTER project.

Leader of work package 4, Senior Assistant Professor at the Department of Electronics, Information and Bioengineering at the Politecnico di Milano. Pietro Pinoli’s broad research interests encompass bioinformatics and computational biology, database and data management, big data technology and algorithms, machine learning and natural language processing. He has authored more than 70 peer reviewed articles in Journals, Conferences and Books. We are happy to have him onboard the BETTER Project!


Watch his interview to hear more about Pietro Pinoli’s role, his motivation and expectations for the BETTER project.

Leader of work packages 3 & 5, PhD degree in Medical Sciences. Project coordinator, Data Steward, and Research Officer at University of Cologne. Not only does Ana Grönke have significant experience in leading international multidisciplinary teams. She is also an experienced Postdoctoral Researcher with a demonstrated history of working in the research industry. This makes her a great asset to the BETTER Project!


Watch her interview to hear more about Ana Grönke’s role, her motivation and expectations for the BETTER project.

Leader of use case 3, a doctor in biology. Head of the Research Laboratory Unit at the Fundació Mútua Terrassa since 2011. Dr. Maria Jesús's work on the pharmacogenetics of antipsychotics is well known, having published leading papers on the use of pharmacogenetics for the prediction of response to antipsychotic and antidepressant treatments. Her specialisation and expertise is an important part of the BETTER Project!

Watch her interview to hear more about Maria Jesús’s role, her motivation and expectations for the BETTER project.

Leader of use case 1, a medical doctor with a PhD degree in human genetics. The head of the genetic medicine department at the San Joan de Déu Children's Hospital in Barcelona, Spain. Francesc Palau Martínez is another vital part of the BETTER Project, where his specialisation and experience is indispensable!

Watch his interview to hear more about Francesc’s role, his motivation and expectations for the BETTER project.

Leader of use case 2, a biologist, a genetician, and a researcher in the Health Research Institute from La Fe in Valencia working in rare diseases. Gema García García is an important part of the BETTER Project and brings her specialised knowledge and experience to the table.

Watch her interview to hear more about Gema’s role, her motivation and expectations for the BETTER project.

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.

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.

A simple blood test may be all there is needed to detect cancer, and even pre-cancer cells, in the future!

How it works:
Scientists have trained an AI model to look at DNA fragments in order to detect and differentiate cancer cells from healthy DNA. In each individual body, all DNA cells are identical. Cancer cells, however, have a different DNA than the body they live in because they are a mutation. An AI model can’t replace healthcare workers, but it can be a great tool as it’s both faster and more reliable in detecting differences at cell level.

Pros:
This AI model can detect cancer and even the initial stages of a mutating cell before it can develop into cancer. It can also spot relapse in cancer patients faster than we are able to today. We already know that early detection can be the difference between life and death when it comes to healthcare.

Cons:
The AI model is so effective that it can detect pre-cancer cells, however, far from all pre-cancer cells develop into actual cancer. As a result, a lot of people can potentially get very invasive medical intervention which would not have been necessary. Not only is this a huge cost in terms of money but also in terms of quality of life for those patients.
Another issue is that the AI model can’t specify where in the body the cancer is located, only that there is cancer or pre-cancer cells present in the blood. In other words; the healthcare workers have to do some detective work to locate it after detection!

Challenge:
The initial research studies for this AI model have been made with a limited group of patients with different types of cancer. To develop a reliable cancer detection AI tool, there is a need for more studies with much more data. Both larger groups of patients and specific studies for each different type of cancer is necessary.



In relation to the BETTER project:
While both this cancer detecting AI model and the BETTER project are AI to be used in the healthcare sector, they are in no way competing with each other. On the contrary!

The cancer detecting AI model is a tool for hands-on healthcare directly involved with patients. All it needs is more research studies and more data to be used.
The BETTER project is working towards a tool for researching, developing, and improving treatment by creating a robust decentralised infrastructure which will enable healthcare professionals to exploit the full potential of larger sets of multi-source health data via tailor-made AI tools useful to compare, integrate, and analyse in a secure, cost-effective fashion across national borders, fully complying with present GDPR privacy guidelines.

Potentially BETTER could in the future be the tool to help develop technology like this cancer detecting AI by helping gather data!


The study has been published in the journal Nature Medicine:
https://www.nature.com/articles/s41591-024-03040-4
“Ultrasensitive plasma-based monitoring of tumor burden using machine-learning-guided signal enrichment”

Even if you’re not a fan of true crime documentaries or podcasts, you’re probably familiar with some of the well-known serial killers from USA in the 1980s. Ted Bundy, Jeffrey Dahmer, and the Golden State Killer to name a few.

Now what does this have to do with healthcare and the BETTER project? I promise there is a connection other than justifying my consumption of true crime podcasts during office hours!

It can get so frustrating to watch true crime documentaries where the serial killer is caught much too late because they committed their crimes in different states and the police stations didn’t share information across borders. In their defence, the technology wasn’t developed to do this effectively at the time!

And looking back, it’s frustrating to know that lives could have been saved if only the technology and knowledge was as good back then as it is today. But they had to start somewhere, and they did learn to share information across borders to save lives!

Now, what does serial killers have to do with improving healthcare?

You see, much like how the police stations not sharing information and experience about a possible serial killer on the loose with other police stations; The same thing could be happening in hospitals about treatment of new or rare illnesses.

Maybe the right information is already discovered in one country, but not in another and the patients suffer because of it! The frustrating feeling about the slow catching of serial killers? Imagine that frustration many years into the future when it’s common practise for healthcare researchers to share experience and wondering why we didn’t already do this back in 2024.


To get there, we need to start somewhere. And this is where the BETTER project comes in, for BETTER healthcare in the future!

First meeting with the BETTER project was a success!

The Grand Hotel Bristol, and the landscape around the city of Stresa, Italy, was a beautiful backdrop for our first meeting in the innovative BETTER project. To grow innovation you need diversity, and what is more diverse than a collaboration of people across both international borders as well as across fields of expertises? It doesn’t get more diverse than the impressive group of bright, ambitious, and determined minds working together in BETTER!

Online meetings are great for working internationally, but nothing beats the good old-fashioned face-to-face meeting. So many conversations and ideas happen during the coffee break or on the walk to the dinner restaurant after the scheduled program of the day. Face-to-face meetings make online meetings easier afterwards, because we now know each other a little better.

Some of us have met before in other projects, however, most of us were introduced for the very first time in Stresa. During the meeting we presented our progress in each work package and use case so far, and discussing the next steps. With new inspiration and motivation in our minds, we all go home and continue our work.

We are looking forward to see what we can accomplish together in the next three years!

When designing and making a Horizon project home page, a lot of considerations have to be done and a lot of people need to be involved, even though their daily focus is not what is communicated but rather what is researched.

When you start the web page, you also consider how to update it, and if it should be stored in a database with access for all, including being an easy target for cyber-criminals or a static page, which we ended up with here. The blog posts are hosted statically, so there is only the webadmins who can change anything, which has both security and monetary advantages (hosting a database is not for free), and the disadvantage that only one person at a time with the right tools can access it.

As the project is also funded by respectively the EU and the UK, there needs to be sufficient links to these organisations and we always have to remember to ask for permission for cookies and have an updated privacy form.

The Design was partially given by a vote on the logo and the page with color scheme evolved from there, also being part of our design manual that is forthcoming. It is intended to be easy to find what you look for and not to be plain walls of text. Later we will add videos both on the front page and in the blogs, describing the research. We will of course also add other communications either as downloadable results or as more traditional blog posts, and will ensure that all news will be announced on our related social media channels.

An issue that is difficult to work around from the outset is photos and logos. When so many partners are to be presented, first of all, it is difficult to find the right person to help, and secondly, when they are helping it may be difficult to get a common thread in the presentations and format, as the web page may change during the design and development process. We will likely update the graphics over time, where needed and where possible. The same goes for all the written contents. As we have 4 target groups, it is also a task in itself to try to address as many as possible this way.

We hope that you like the first version that we present here today, but you are always welcome to send us comments to make it better!

Happy and fruitful reading!

The Rheasoft BETTER communication team!