This new sub project of CONNECT aims to establish a better transfer of structured data for molecular analyses from pathology in the hospitals.
Eimir Hurley is the new project manager for CONNECT INSPIRE-BIO. She is a pharmacoepidemiologist with a background in the leadership and conduct of real-world evidence studies examining medication use, safety, and efficacy.
“I have a special interest in both how we can enhance the infrastructure around health data and how we can use this health data in a safe and ethical manner”, said Eimir Hurley.
While the enormous growth in the volume of large scale genomic and biomarker data in recent decades has raised expectations concerning its impact on research and patient care, there are significant challenges in this domain.
Enhanced data use
INSPIRE-Bio is a sub-project in CONNECT that speaks directly to this aim of enhanced data use. It addresses specific requirements for infrastructure, analysis, data access, and data sharing, as well as harmonization of genomic data. It is a public-private project, with an operative working group of members from the Norwegian Cancer Registry, pharmaceutical industry partners, Information and Communication Technology at hospitals, and the Norwegian Directorate of Health.
The aim of INSPIRE-BIO is that existing and future results of testing for biomarkers/ genetic profiles are integrated into the Cancer Register and the National Genome Centre. A central part of the project is to establish a better transfer of structured data for molecular analyses from pathology in the hospitals.
“To achieve this, information must be documented and stored in a standardized and structured way that facilitates the exchange of information between different systems and for the reuse of data without manual processes. One of the goals therefore for the work in INSPIRE-Bio is to find out how we can facilitate the most harmonized and appropriately structured way of describing genome/mutation information”, Hurley explained.
The project expects to establish pilots in various health regions to test the suitability of the local systems to adapt to these changes in information capture and flow.
The health data infrastructure
Hurley, who is Irish, was drawn to Norway by the caliber of the health data infrastructure in the Nordic Region, and the forward-thinking attitude of decision makers to support the use of this data in life science research.
“It was always an ambition of mine to spend time in Norway and get familiar with the Norwegian health data ecosystem and how it has been developed and expanded”, said Eimir Hurley.
She underlines that the ability to link data from high quality population and disease-specific registers offers a profound opportunity to generate evidence that has a direct positive impact on patient lives.
Experience from COVID-19 studies
Eimir Hurley was delighted to join the PharmacoEpidemiology and Drug Safety (PharmaSafe) Group at the University of Oslo in 2021, where she worked with Professor Hedvig Nordeng and colleagues on several cross-European studies examining the impact of COVID-19 (and the medication used to treat it) on pregnancy. During this time, she worked with passionate researchers all over Europe on projects that leveraged the power of large existing healthcare datasets to answer pressing questions from the European Medicines Agency (EMA), that could only be answered by harmonizing this existing health data.
The new project manager of CONNECT INSPIRE-BIO combines the role with a position at Ledidi. This is a Norwegian company that offers an end-to-end platform to researchers, clinicians, and hospital systems, both locally and internationally, to store health data and collaborate on projects and clinical studies.
“I have been fortunate to enjoy a very stimulating career to date that has allowed me to live and work in the US, Australia, Ireland (home!), and more recently Norway”, said Eimir Hurley.
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