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#HealthData

2 posts2 participants0 posts today

👩‍💻 Real-world #HealthData and evidence (RWD/RWE) have immense potential to advance the development and evaluation of medicines, medical devices, and drug-device combinations. Guidance on how this could work exists, but is high level, and implementing it in practice is far from easy.
👋 Meet new IHI project GREG, which aims to to turn this situation around by generating guidance and tools to boost the impact of #RWE in Europe.
👉 europa.eu/!nGJj9x

IHI Innovative Health InitiativeNew project to boost impact of real-world evidence in EuropeThe GREG project plans to advance the use of real-world data and evidence in the development and evaluation of medicines and medical devices.

As a first post I would like to not highlight my own research, but the research of my colleagues, since I really love the way how this research began: With a question many people have asked.

As our working group researches on topics on #anonymization and #deidentification of medical and health data, the risk of identifying people or their membership in certain groups (e.g. having a specific diagnosis) is always present. On one of our retreats they decided to research the question:

Who are those adversaries, trying to do re-identify people in health data sets, what are their motives and what could be the harm?

The results can be found in the #OpenAccess paper: Health Data Re-Identification: Assessing Adversaries and Potential Harms

doi.org/10.3233/SHTI240626

doi.orgIOS Press Ebooks - Health Data Re-Identification: Assessing Adversaries and Potential Harms

🎧 The final episode of Research Data: Handle with Care is out now!

If you’ve ever wondered how researchers responsibly handle health data, or how data protection and open science can work hand in hand, this series is for you.

📖 Learn more about the episodes: nfdi4health.de/en/news-eng/lat

Thanks to everyone who contributed their insights. This was a amazing collaboration with the NFDI4Health Consortium!

We caught 4 more states sharing personal health data with Big Tech
Healthcare exchanges in Nevada, Maine, Massachusetts and Rhode Island shared users’ sensitive health data with companies like Google and LinkedIn

Maine’s exchange, CoverME.gov, sent information on drug prescriptions and dosages to Google through an analytics tool. It also sent the names of doctors and hospitals that people had previously visited.
Google is an illegal monopoly, losing three different antitrust cases in the US over the last few years. None of us should be sending them data anymore, let alone state-run services.

https://themarkup.org/pixel-hunt/2025/06/17/we-caught-4-more-states-sharing-personal-health-data-with-big-tech

#maine #surveillance #healthcare #HealthData #BigTech #IllegalMonopoly
themarkup.orgWe caught 4 more states sharing personal health data with Big Tech – The MarkupHealthcare exchanges in Nevada, Maine, Massachusetts and Rhode Island shared users’ sensitive health data with companies like Google and LinkedIn

📢 How can projects maximise the #regulatory impact of their results? Together with the Critical Path Institute, we published a paper in Nature Reviews Drug Discovery that draws on our experience of managing consortia.
The key lessons? Projects need:
📑 A clear regulatory strategy
👩‍💻 A #HealthData management plan aligned with regulatory goals
📗 A sustainability plan to ensure data availability after the project ends
💬 Early engagement with regulators
Find out more 👉 europa.eu/!nKyFyQ

IHI Innovative Health InitiativeNew paper in Nature Reviews Drug Discovery highlights how to maximise the regulatory impact of consortium-based projectsThe paper, by authors from IHI and the Critical Path Institute, highlights the importance of a structured, strategic approach to regulatory issues from the beginning.

📰 The April newsletter is out at europa.eu/!xxPNx6
📚 The draft topic texts for IHI call 11 are available and registration for the #IHICallDays is open
📅 On events, we have a the #MedTechForum and a session on our #cancer projects coming up.
📓 Read the report of our workshop on #HealthData and #DigitalHealth
✅ Discover project successes on #vaccines and #LiverDisease
👋 Meet new IHI projects READI and ENKORE
#IHITransformingHealth #HorizonEU #Health #Research #Funding