Welcome to our blog. This periodic blog on emerging themes related to the research use of health data invites project colleagues as well as acknowledged experts in their fields to share views on emerging themes in working with observational, or real world data and evidence generation.
Our field is evolving rapidly with reference to data, methodology, tools and skills, and governance aspects. We therefore hope that our blog will serve as a forum for the project and colleagues to stimulate the wider debate. EHDEN encourages you to participate in this discussion, as collaboration is one of the cornerstones to optimising evidence generation for the 21st century, impacting positively on clinical care and patient outcomes.
BLOG - Transforming Healthcare Through Education: What’s Next for the EHDEN Academy?
July 2024
The EHDEN Academy is a free, online educational resource for professionals in the domains of real world data (RWD) and real world evidence (RWE). Originating from the collaborative framework of the EHDEN project and supported by the Innovative Medicines Initiative 2 (IMI2) joint undertaking, the EHDEN Academy operates on a global scale, currently engaging more than 5,350 active learners across 108 countries.
BLOG - Navigating the EHDEN Project as a PhD Student: Challenges, Learnings, and Triumphs
May 2024
Starting any PhD can be a bit of a daunting experience. Even more so when you jump into a major international project like EHDEN.
BLOG - New HTA Courses now available on EHDEN Academy
April 2024
As part of our commitment to education, we at the EHDEN Academy are pleased to share our new HTA track of courses, curated by our partner NICE and developed by leading experts. These courses are designed to empower healthcare professionals, researchers, and policy-makers with the tools and knowledge needed to drive innovation and efficiency in healthcare.
BLOG - Federated data networks and health technology assessment: Insights from an EHDEN study-a-thon in oncology
March 2024
Assessing cancer treatments presents a significant challenge to HTA agencies. This is because they need to estimate the long-term costs and outcomes of treatments based on limited short-term clinical trial data.
BLOG - Data Saves Lives/EHDEN Patient Registries Bootcamp
February 2024
On 5-6 December 2023, I had the pleasure to be part of the third Data Saves Lives Ambassador Training Bootcamp in Brussels. EHDEN has been working closely with the European Patients’ Forum (EPF), an EHDEN Consortium member since the EHDEN project began in 2018, and this was an excellent opportunity to broaden our collaboration to support the Data Saves Lives initiative.
BLOG - FinOMOP consortium – a national data resource for improved research and health care management across Finland
January 2024
Mapping Finnish medical terms into the OMOP Common Data Model started as research collaboration in 2020. The exciting possibility to use numerous OHDSI-developed tools in cohort-building, case-control comparisons, visualisations, and analytics expanded quickly across all Finnish University Hospitals, University of Helsinki, and the Finnish Institute for Health and Welfare (THL).
BLOG - Getting to the root of an alopecia areata EHDEN study-a-thon
December 2023
Sustainable healthcare in Europe requires a better use of health data. For multiple stakeholders, including pharmaceutical organisations, real world evidence generation that is transparent, scalable and reproducible is vitally important.
BLOG - Italy’s OHDSI node moving full speed ahead
November 2023
In recent years, and much like we are witnessing across the rest of Europe, Italy has seen a significant surge in interest in OHDSI and the OMOP Common Data Model (CDM). As the R&D Manager at BIOMERIS, I've observed this trend across several hospitals and scientific organisations, including registries, as well as among various stakeholders interested in observational research.
BLOG - LAISDAR: Improving COVID-19 Care in Rwanda
October 2023
Assisting EHDEN Data Partners in mapping their data to the OMOP Common Data Model has been a key part of our activities these past four years. This work has pushed us to grow as a team and as a company; it has also given us valuable experience and insight that we have brought with us to projects outside the EHDEN network.
BLOG - Leveraging OHDSI Tools and Data
September 2023
Biomedical Informatics is an applied multidisciplinary field on the use of data and information technologies to improve healthcare. OHDSI has the tools, data, and clinical scenarios to create the coursework for students.
BLOG – EHDEN “Long COVID and PASC” study-a-thon
June 2023
With a substantial proportion of the European population having had COVID-19 at some point in the previous years, long-term complications are becoming increasingly prevalent. Studies suggest that about one out of ten people do not fully recover from their acute disease, and present ongoing symptoms for three months or longer.
BLOG – Concentric Circles View (CCV) – What does this mean for how we protect patients when using their health data
May 2023
In September 2022, Frontiers in Big Data published the paper “A concentric circles view of health data relations facilitates understanding of sociotechnical challenges for learning health systems and the role of federated data networks”. The study uses this understanding of human relationships to suggest how we can improve data protection and create systems that are able to meet the changing needs of health research, while keeping patients’ privacy as the leading priority.
BLOG - Contextualising adverse events of special interest to characterise the baseline incidence rates in 24 million patients with COVID-19 across 26 databases: a multinational retrospective cohort study
April 2023
To our knowledge this is the largest COVID-19 study to date with more than twenty-four million COVID-19 patients and twenty-six databases across three continents. This study provides essential context on the complications in unvaccinated subjects and shows a striking increase in risk of outcomes after COVID-19, like pulmonary embolism (x12), disseminated intravascular coagulation (x9), and myocarditis/pericarditis (x8).
BLOG - Generative Pre-trained Transformers and real world research: on the band wagon with ChatGPT 3
February 2023
Right now, we are all on riding on the Gartner Hype Cycle with regards to ‘AI bots’ and generative pre-trained transformers, based on large language models, such as OpenAI’s ChatGPT 3, or Google’s Bard, based on its LaMDA technology. Despite the excitement, or even hysteria around developments in generative AI (artificial intelligence, but perhaps more EI, ‘ersatz intelligence’), it does not take much imagination to extrapolate a potential role or indeed roles for this technology in health research.
BLOG - International collaboration - advancing the use of real-world evidence in health technology assessment
January 2023
Dr Ravinder Claire outlines recent progress towards greater use of real-world evidence in regulatory decision-making. He also considers the implications and opportunities for NICE and our stakeholders.
BLOG – A Conceptual Framework for Working with Public Data
December 2022
A publication in Frontiers in Big Data was posted on 16 September, 2022: “A concentric circles view of health data relations facilitates understanding of sociotechnical challenges for learning health systems and the role of federated data networks”. The authors set out a model of data systems that they call “Concentric Circles View” (CCV) of data relationships that is meant to help researchers and others
BLOG – Collaboration and the Safer Use of Health Data
October 2022
The use of health data has had an interesting evolution. When I look back to the mid-1980s when I was in general practice in London, and first became aware of the important role computers can play in clinical care
BLOG – GetReal: Leveraging its history to facilitate a collaborative approach for the use of RWE in Europe
September 2022
Before I share details about GetReal, let me first outline our evolution. The GetReal Institute was established as an independent and sustainable continuation of two Innovative Medicines Initiative (IMI) projects.
BLOG – Reflections on the OHDSI Europe Symposium 2022
July 2022
The OHDSI Europe Symposium 2022 (24-26 June) kicked off aboard the majestic transatlantic ship: the SS Rotterdam (moored permanently on the Meuse river in Rotterdam). It was a very anticipated and successful event in many respects, so I thought it would be worthwhile to reflect on what made this one so special.
BLOG – Real World Data’s Expanding Role in Conducting Research & Lessons Learned from COVID-19
June 2022
My team and I are very pleased to see the COVID-19 virus waning thanks to vaccines (and mutations), and that we’re now in a much better place. However, it’s nevertheless still with us and there’s necessarily great interest in the long-term consequences of long COVID..
BLOG - Ensuring a successful EHDEN future
April 2022
In the EHDEN project, sustainability and outreach were inherent in its design in Work Package 6 (WP6) right from the very beginning, which differentiated it from many other IMI projects.
BLOG – An Inside Look at Open Science Community Management
March 2022
Open science is playing an increasingly important role in our rapidly changing world. Open science, as defined by the OECD, makes the primary outputs of publicly funded research results – publications and research data – publicly accessible in digital format with no or minimal restriction.
BLOG – E-thons: paving the way for generating faster real world evidence
February 2022
With the European Health Evidence & Data Network (EHDEN) now in its third year, efforts are more than ever being focused on the second “E” – generating evidence.
BLOG – 2022 Trends in Health Data and for EHDEN
January 2022
We at EHDEN hope that you had a recuperative break at the end of 2021, start of 2022, but of course this is well in the rear view mirror as we are already close to the end of January.
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