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 - Leveraging OHDSI Tools and Data
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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.