In data we trust, if patients are involved.
"I had the chance recently to take part of two important meetings: The Harmony General Assembly (Valencia, October 4-5) and the BD4BO Symposium (Brussels, October 11). The Harmony GA presented the usual reports from the working groups and a few guest lectures about the importance of big data in research. There were also relevant disease specific discussions on the projects proposed by KOLs for the specific malignancies that form part of HARMONY. It was clear we all believe in the potential value behind the data generated every day, which could serve as a practically inexhaustible source of knowledge to fuel a learning healthcare system. Just a few decades ago this data was rarely investigated and basically wasted as a source of medical research. Today, we all are mostly on the same page regarding the need to revolutionize, harmonize and structure the way health professionals gather, assemble, store, connect and share data. Moreover, the focus needs to move to how to interpret data and then connect the dots.
The discussions also raised questions about data access and patient privacy. Ensuring privacy and scientific rigor are challenges. It has taken HARMONY two years to tackle legal, data anonymization and IT issues, but now is the time that first data from thousands of patients are being uploaded into the platform, so that the first decisions about what the research projects will do, based on those data, are being taken now.
It’s encouraging see that many key projects within HARMONY are starting now, even though not all the proposals for the different hematological malignancies move at the same speed. However, we can celebrate some progress and we also have some challenges ahead. Patient representatives may be decisive partners to bring answers to the many questions raised during these two meetings. That is the reason why we need to make sure patient involvement is consistent and systematic at every stage. For example, patients have lots to say regarding ethical questions about anonymization, informed consent and similar issues, and have a potential for collecting, processing and systematically providing real-world data to KOLs and other stakeholders.
Regarding the Delphi survey on Core Outcomes, it is crucial that the Delphi is understandable also to patients responding to it, then pushing for translations into more languages, and then recruiting the highest possible number of patient participants in the Delphi will be key.
HARMONY is a pan-European project with a strong potential for global impact, and there is no similar Big Data project in haematology that will bring academic study group and industry data together into one analytics platform. Let’s keep the momentum."
This might interest you as well: a video interview with Prof. Bolaños, filmed during the 23rd Congress of the European Hematology Association (EHA).
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