IDEA4RC Project

A Horizon Europe project developing an intelligent ecosystem to facilitate the re-use of Rare Cancers data for research. #IDEA4RC #RareCancers #HealthData

[IDEA4RC Project @idea4rc]

#IDEA4RC is a @HorizonEU project led by @IstTumori that aims at developing an intelligent #ecosystem to facilitate the sharing and re-use of #healthdata on #RareCancers to promote #research and improve patients access to care. Find out more on our website https://t.co/MilC1tgbMa

[IDEA4RC Project @idea4rc]

Next week members of the #IDEA4RC project will gather in Rome for the fifth consortium meeting, hosted by @EngineeringSpa

Read the agenda on our website
👉 https://t.co/3KRkEOXYyO

#HorizonEurope #EHDS #EuropeanHealthDataSpace #ArtificialIntelligence #LargeLanguageModels #AI

[IDEA4RC Project @idea4rc]

Next week members of the #IDEA4RC project will gather in Rome for the fifth consortium meeting, hosted by @EngineeringSpa

Read the agenda on our website
👉 https://t.co/hTCwxfZbG1

#HorizonEurope #EHDS #EuropeanHealthDataSpace #ArtificialIntelligence #LargeLanguageModels #AI

[IDEA4RC Project @idea4rc]

📩 The 8th issue of the #IDEA4RC #newsletter is out!

In this issue:

🎤 IDEA4RC researchers are developing a Natural Language Processing (NLP) model to extract data on rare cancers from the notes and reports written by clinicians, radiologists and pathologists. We interviewed Unai Zulaika, a computer engineer at the University of Deusto in Bilbao, and Soumitra Gosh, a researcher at Fondazione Bruno Kessler in Trento, who are leading the NLP efforts within the IDEA4RC project.

👥👥👥 On November 21-22, IDEA4RC partners will gather in Rome for the fifth consortium meeting.

🗞 What happened in data-sharing and re-use in #Europe lately? Get an idea from the news round up section of our newsletter.

👉 All of this in the latest issue of our newsletter. You can read it on our website:
https://t.co/FIeBgN3BKT

📩 If you wish to subscribe to the newsletter, follow this link:
https://t.co/zUosJp2tXL

#RareCancers #EHDS #EuropeanHealthDataSpace #ArtificialIntelligence #NaturalLanguageProcessing #NLP

@HorizonEU @ERN_EURACAN @IstTumori @FBK_research @DeustoTech @Deusto

[IDEA4RC Project @idea4rc]

Are you interested in learning more about the solutions #IDEA4RC is developing to reuse #RareCancers #data? Would you like to better understand how the #EuropeanUnion is regulating #HealthData reuse, especially for research purposes?

Are you part of a rare cancer #patient organisation looking to contribute to defining IDEA4RC’s #governance? Or a #research organisation eager to access IDEA4RC’s data? Perhaps you are a healthcare provider interested in contributing to IDEA4RC with your data in the future?

👥 👥 👥 Join our Community of Interest to participate in dedicated events, receive updates, and meet the researchers who are imagining how facilitating the reuse of rare cancer data can improve the quality of care for people living with these diseases 👥 👥 👥

👉 https://t.co/pJKh0H0Db2

#HorizonEurope #EHDS #EuropeanHealthDataSpace #ArtificialIntelligence #LargeLanguageModels #AI

@IstTumori @IREISGufficiale @AlleConCancro @HorizonEU @ERN_EURACAN

[IDEA4RC Project @idea4rc]

#IDEA4RC has just launched its Community of Interest, beginning with #patients' representatives from @ERN_EURACAN, the European Reference Network devoted to rare adult solid cancers. The Community will gradually include other professional categories, collectively shaping and informing the development of the IDEA4RC #data ecosystem.

How can patients contribute to research? What are the best ways to engage with them? How did they organise themselves and contribute to other data-driven projects promoted by EURACAN?

We spoke about these issues with Lidia Villanova, project manager at @AlleConCancro who is leading the activities related to the Community of Interest, and Ariane Weinman, public affairs team at @eurordis .

Read the full interview here 👇
https://t.co/c3Oy34Kayh

#RareCancers
#EuropeanHealthDataSpace
#ArtificialIntelligence
#PatientsEngagement
#LargeLanguageModels

@sarcomapatients @Infosarcomes @EngageEsgo @netcancerday @dice_europe @TCA_thyroidca @SGCancerUK @theIBTA @IstTumori

[IDEA4RC Project @idea4rc]

One out of four cancers diagnosed each year in #Europe is a rare #cancer.

Research on #RareCancers would greatly benefit from the analysis of large and diverse data sets, which is currently hampered by lack of interoperability among clinical centres and personal data protection requirements.

#IDEA4RC is a @HorizonEU project aimed at developing an intelligent #data ecosystem for rare cancers to facilitate the re-use of health data across clinical centres in different EU member countries. It will be tested on 11 Expert Centres of @ERN_EURACAN, the European reference network for rare adult solid cancers.

Listen to Annalisa Trama, epidemiologist at @IstTumori and project coordinator, introducing the vision and ultimate scope of IDEA4RC.

📹 Watch the full video here https://t.co/n0tHN3Rswb

#EHDS #EuropeanHealthDataSpace #HealthData #NaturalLanguageProcessing #ArtificialIntelligence #NLP #LargeLanguageModels #LLM

@HealthDataHub @LifeSTech @FBK_reseaech @deusto @deustoMORElab @DeustoTech @europrivacy @tehdas

[IDEA4RC Project @idea4rc]

📩 The 8th issue of the #IDEA4RC #newsletter is out!

In this issue:

🎤 IDEA4RC researchers are developing a Natural Language Processing (NLP) model to extract data on rare cancers from the notes and reports written by clinicians, radiologists and pathologists. We interviewed Unai Zulaika, a computer engineer at the University of Deusto in Bilbao, and Soumitra Gosh, a researcher at Fondazione Bruno Kessler in Trento, who are leading the NLP efforts within the IDEA4RC project.

👥👥👥 On November 21-22, IDEA4RC partners will gather in Rome for the fifth consortium meeting.

🗞 What happened in data-sharing and re-use in #Europe lately? Get an idea from the news round up section of our newsletter.

👉 All of this in the latest issue of our newsletter. You can read it on our website:
https://t.co/FIeBgN3BKT

📩 If you wish to subscribe to the newsletter, follow this link:
https://t.co/zUosJp2tXL

#RareCancers #EHDS #EuropeanHealthDataSpace #ArtificialIntelligence #NaturalLanguageProcessing #NLP

@HorizonEU @ERN_EURACAN @IstTumori @FBK_research @DeustoTech @Deusto

[IDEA4RC Project @idea4rc]

Many of the variables that clinicians find essential for #RareCancer research are hidden within clinicians' notes, pathology reports, or radiology records. These documents are written in natural language, which can be processed by training #LargeLanguageModels on labelled text.

However, the diversity in writing styles, formats, and the specialised clinical knowledge required to associate specific words or phrases with disease variables and treatments makes this a challenging task.

🎤 We interviewed Unai Zulaika, a computer engineer at the University of Deusto in Bilbao, and Soumitra Ghosh, a researcher at Fondazione Bruno Kessler in Trento, who are leading the NLP efforts within the IDEA4RC project.

👉 https://t.co/ZyO9y1T1Za

#EHDS #EuropeanHealthDataSpace #ArtificialIntelligence #LargeLanguageModels #AI #NaturalLanguageProcessing #RareCancers

@HorizonEU @ERN_EURACAN @IstTumori @FBK_research @DeustoTech @Deusto

[IDEA4RC Project @idea4rc]

Many of the variables that clinicians find essential for #RareCancer research are hidden within clinicians' notes, pathology reports, or radiology records. These documents are written in natural language, which can be processed by training #LargeLanguageModels on labelled text.

However, the diversity in writing styles, formats, and the specialised clinical knowledge required to associate specific words or phrases with disease variables and treatments makes this a challenging task.

🎤 We interviewed Unai Zulaika, a computer engineer at the University of Deusto in Bilbao, and Soumitra Ghosh, a researcher at Fondazione Bruno Kessler in Trento, who are leading the NLP efforts within the IDEA4RC project.

👉 https://t.co/ZyO9y1T1Za

#EHDS #EuropeanHealthDataSpace #ArtificialIntelligence #LargeLanguageModels #AI #NaturalLanguageProcessing #RareCancers

@HorizonEU @ERN_EURACAN @IstTumori @FBK_research @DeustoTech @Deusto

[IDEA4RC Project @idea4rc]

Among the goals of the #EuropeanHealthDataSpace is facilitating data access for research and innovation purposes.

A recent #comment published in @NatureMedicine by experts in various health data research fields highlights how cross-border sharing of health data can benefit the public.

The authors note that "the research community has a lot at stake in terms of securing #public #support." In fact, although the EHDS mandates data holders to share their data, individual citizens still have the option to #OptOut.

"Public opinion studies suggest that although the majority of citizens support using health data for research purposes, they also document a hesitation towards both commercial access and cross-border data usage. People might therefore choose to opt out on the basis of general reluctance, especially if the research community does not clearly demonstrate the benefits to public health of cross-border data sharing. For EHDS to deliver on its research promise, it is therefore necessary to explain why research enabled by the EHDS infrastructure might be beneficial to European citizens."

The authors identify four interconnected areas in which improved data availability can enable better research outputs:
1️⃣ opportunities to explore differences
2️⃣ access to real-world data,
3️⃣ continuous public health surveillance
4️⃣ increased data diversity

🗞 Read the full paper in Nature Medicine https://t.co/Sq239TFDwF

[IDEA4RC Project @idea4rc]

Among the goals of the #EuropeanHealthDataSpace is facilitating data access for research and innovation purposes.

A recent #comment published in @NatureMedicine by experts in various health data research fields highlights how cross-border sharing of health data can benefit the public.

The authors note that "the research community has a lot at stake in terms of securing #public #support." In fact, although the EHDS mandates data holders to share their data, individual citizens still have the option to #OptOut.

"Public opinion studies suggest that although the majority of citizens support using health data for research purposes, they also document a hesitation towards both commercial access and cross-border data usage. People might therefore choose to opt out on the basis of general reluctance, especially if the research community does not clearly demonstrate the benefits to public health of cross-border data sharing. For EHDS to deliver on its research promise, it is therefore necessary to explain why research enabled by the EHDS infrastructure might be beneficial to European citizens."

The authors identify four interconnected areas in which improved data availability can enable better research outputs:
1️⃣ opportunities to explore differences
2️⃣ access to real-world data,
3️⃣ continuous public health surveillance
4️⃣ increased data diversity

🗞 Read the full paper in Nature Medicine https://t.co/CnLaFOzcFR
#HealthData #EHDS #RareCancers #IDEA4RC

[IDEA4RC Project @idea4rc]

🎤 Read our interview with Vasiliki Tsiompanidou, legal researcher @europrivacy , about the legal challenges in navigating the shifting hashtag #EU #legal landscape concerning #HealthData sharing and re-use.

To deploy the pilot projects, which will start later this year to test the #IDEA4RC platform on #RareCancers and will involve 11 clinical centres of @ERN_EURACAN, data governance will be set by #GDPR, whose interpretation can vary a lot across EU member states.

At the end of the project, the platform will need to abide by the requirements set by the #EHDS, which has been recently approved by the European Parliament.

To discover how #IDEA4RC researchers are addressing these issues, read the full interview on our website
👉 https://t.co/gXtkRMNhCZ

#ArtificialIntelligence #NLP #NaturalLanguageProcessing #HorizonEurope #HealthUnion

@IstTumori @HorizonEU

https://t.co/gXtkRMNhCZ

[IDEA4RC Project @idea4rc]

Are you interested in learning more about the solutions #IDEA4RC is developing to reuse #RareCancers #data? Would you like to better understand how the #EuropeanUnion is regulating #HealthData reuse, especially for research purposes?

Are you part of a rare cancer #patient organisation looking to contribute to defining IDEA4RC’s #governance? Or a #research organisation eager to access IDEA4RC’s data? Perhaps you are a healthcare provider interested in contributing to IDEA4RC with your data in the future?

👥 👥 👥 Join our Community of Interest to participate in dedicated events, receive updates, and meet the researchers who are imagining how facilitating the reuse of rare cancer data can improve the quality of care for people living with these diseases 👥 👥 👥

👉 https://t.co/pJKh0H0Db2

#HorizonEurope #EHDS #EuropeanHealthDataSpace #ArtificialIntelligence #LargeLanguageModels #AI

@IstTumori @IREISGufficiale @AlleConCancro @HorizonEU @ERN_EURACAN

[IDEA4RC Project @idea4rc]

#IDEA4RC has just launched its Community of Interest, beginning with #patients' representatives from @ERN_EURACAN, the European Reference Network devoted to rare adult solid cancers. The Community will gradually include other professional categories, collectively shaping and informing the development of the IDEA4RC #data ecosystem.

How can patients contribute to research? What are the best ways to engage with them? How did they organise themselves and contribute to other data-driven projects promoted by EURACAN?

We spoke about these issues with Lidia Villanova, project manager at @AlleConCancro who is leading the activities related to the Community of Interest, and Ariane Weinman, public affairs team at @eurordis .

Read the full interview here 👇
https://t.co/c3Oy34Kayh

#RareCancers
#EuropeanHealthDataSpace
#ArtificialIntelligence
#PatientsEngagement
#LargeLanguageModels

@sarcomapatients @Infosarcomes @EngageEsgo @netcancerday @dice_europe @TCA_thyroidca @SGCancerUK @theIBTA @IstTumori

[IDEA4RC Project @idea4rc]

Are you interested in learning more about the solutions #IDEA4RC is developing to reuse #RareCancers #data? Would you like to better understand how the #EuropeanUnion is regulating #HealthData reuse, especially for research purposes?

Are you part of a rare cancer #patient organisation looking to contribute to defining IDEA4RC’s #governance? Or a #research organisation eager to access IDEA4RC’s data? Perhaps you are a healthcare provider interested in contributing to IDEA4RC with your data in the future?

👥 👥 👥 Join our Community of Interest to participate in dedicated events, receive updates, and meet the researchers who are imagining how facilitating the reuse of rare cancer data can improve the quality of care for people living with these diseases 👥 👥 👥

👉 https://t.co/pJKh0H0Db2

#HorizonEurope #EHDS #EuropeanHealthDataSpace #ArtificialIntelligence #LargeLanguageModels #AI

@IstTumori @IREISGufficiale @AlleConCancro @HorizonEU

[IDEA4RC Project @idea4rc]

✉️ The seventh issue of the #IDEA4RC #newsletter is out!

🎤 Want to discover what is #FederatedLearning and how the IDEA4RC platform will employ it to allow clinical centres to run analyses on the combination of their data while preserving their patients' #privacy? Read our interview with Frank Martin, software engineer at @IKNL (Integraal Kankercentrum Nederland) and member of the IDEA4RC consortium.

🔁 Read about the #conferences where IDEA4RC researchers are #sharing their work on the project and discussing it within their communities.

🗣️ We are very glad to announce that in May 2025 IDEA4RC will take part in @VitalisKonf, Nordic region’s leading conference and trade fair on the future of #healthcare.

🗞 What happened in data-sharing and re-use in #Europe lately? Get an idea from the news round up section of our newsletter.

👉 All of this in the latest issue of our newsletter. You can read it on our website:
https://t.co/EpQx8BTrRr

📩 If you wish to subscribe to the newsletter, follow this link:
https://t.co/LbgB0nTkuv

#RareCancers
#EHDS
#EuropeanHealthDataSpace
#ArtificialIntelligence
#NaturalLanguageProcessing
#NLP

@IstTumori @HorizonEU

[IDEA4RC Project @idea4rc]

In building its #RareCancers ecosystem, #IDEA4RC is following a #FederatedLearning approach. This means that the data of each clinical centre participating in a specific research study will not leave the centre. Instead, the results of the analysis on each centre’s data will be communicated to a central server, where they will be combined with others in a way that produces results very close to what would have been obtained by running the analysis on the aggregated data.

This choice is motivated by the need to protect patients’ hashtag#privacy. Within the IDEA4RC consortium, the work on federated learning is led by the @IKNL, an independent knowledge institute for oncological and palliative carein the Netherlands .

🎤 We spoke to Frank Martin, software engineer at IKNL who has been involved in IKNL projects on federated learning since the beginning and is now working on IDEA4RC.

👉 Read the interview on the project's website
https://t.co/cdlmFKc7mZ

#EHDS #EuropeanHealthDataSpace #HealthData #ArtificialIntelligence #LargeLanguageModels #CancerResearch

@IstTumori @La_UPM @LifeSTech @DeustoTech @deustoMORElab @ERN_EURACAN

[IDEA4RC Project @idea4rc]

#IDEA4RC has just launched its Community of Interest, beginning with #patients' representatives from @ERN_EURACAN, the European Reference Network devoted to rare adult solid cancers.

How can patients contribute to research? What are the best ways to engage with them? How did they organize themselves and contribute to other data-driven projects promoted by EURACAN?

We spoke about these issues with Lidia Villanova, project manager at @AlleConCancro who is leading the activities related to the Community of Interest, and Ariane Weinman, public affairs team at @eurordis

Read the full interview here 👇
https://t.co/r8sUF6483e
#RareCancers #HealthData #EuropeanHealthDataSpace #EHDS #ArtificialIntelligence #PatientsEngagement #LargeLanguageModels
@sarcomapatients
@Infosarcomes

@EngageEsgo
@netcancerday

@dice_europe

@TCA_thyroidca
@SGCancerUK
@theIBTA

[IDEA4RC Project @idea4rc]

On July 16th, @ClaudiaEgher presented the work done so far on #IDEA4RC together with @susanvanhees and Wouter Boon @UniUtrecht at #EASST4S2024, a global event that brings together every four years the Science and Technology Studies community #STS

Read the abstract of Claudia's contribution here https://t.co/S9MP29T3P8

#RareCancers #HealthData #AI #EHDS #LargeLanguageModels #EuropeanHealthDataSpace

[EASST @STSeasst]

🎉Day 1 at #EASST4S2024 was filled with creativity and academic oomph! From oceanic futures🌊 to forestscapes🌳 and food co-creation🍲

Check out the highlights in our recap video!🎥

ℹ️ https://t.co/Rtwpsa5VyW

Questions? ✉️ [email protected]

[IDEA4RC Project @idea4rc]

Health Level Seven International's #FHIR specifications are becoming increasingly popular and instrumental in advancing interoperability in healthcare and transforming digital ecosystems around the world.

But can this be measured? A team of researchers led by Roberta Gazzarata @hl7europe has scanned more than 500 scientific papers in chronic disease management for references to #HL7 #FHIR Implementation Guides (IG), and found that interest in IGs picked up in 2021, with Europe and North America leading the pack.

Join Roberta and co-authors in the @EFMI "Webinar on HL7 FHIR in Digital Healthcare Ecosystems" on Thursday, 18 July 2024 at 12.00 CEST to discuss her findings.

Speakers include:
👉Catherine E Chronaki, HL7 Europe
👉Roberta Gazzarata, HL7 Europe
👉Lars Lindsköld, EFMI

You can register here: https://t.co/dgQHBxZPRf

The webinar is based on a paper published in @IJMedIn and supported by #IDEA4RC.

You can read a summary and find the full text here:
https://t.co/QM0M72Kns9

@EFMI @infoSFMI @AISweden @hl7europe @LifeSTech @HorizonEU