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Donate your data

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Today is Organ Donation Day. Millions of European citizens have signed up to allow their organs to be used for transplantation after they die. My friend Miklós Szócska, former health minister of Hungary, suggested we need the same approach for the use of health data.

Just as a heart transplant might save someone’s life and a liver transplant could extend someone else’s life, health data will advance science and speed up the development of new medicines.

There is a clear analogy here. Miklos suggested we run a campaign, entitled: “donate your data”, for people to opt in for research. A great idea.

Apple ResearchKit and 23andme have been registered great success in the US. But many citizens are not keen on sharing data with Silicon Valley or Big Pharma.

That is why we need a collaborative approach, with a strong focus on integrity and respect for privacy. In our new program in IMI on Big Data for Better Outcomes (BD4BO) we will invest in big data solutions. EFPIA is committed to working with all stakeholders, and under close scrutiny by civil society and elected representatives, to recruit Europe’s citizens to share data to advance science. Just as a transplant organ from a human body can save lives, so too can data.

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EFPIA Director General

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