“A cooperative will soon be established. It will be led by patient representatives…We think it’s important that third parties don’t use all that medical data without the patient’s consent. The parties directly involved should oversee it. And why should big companies like Google and Microsoft profit from storing medical data?”says Nicole Spieker PharmAccess CEO.
What happens to individual’s health data is a topic that continues to gather pace at both the public and governmental levels. Recently Nicole Spieker, CEO of PharmAccess was interviewed by Dutch newspaper Trouw and addressed the opportunity of establishing a health data cooperative to ensure individual’s health data doesn’t end up in the hands of big US tech companies. Click the link under the Trouw article for an English summary of what was said.
Similarly, colleagues Marleen Hendriks and AHTI’s Steven van de Vijver were also interviewed about their perspective on health data. Their point is clear: “Er is er maar één de baas over zorgdata: de patient“. This translates to “There is only one boss over healthcare data, the patient“.
JLI believes there is much to gain from sharing data in health. We push to find solutions that allows society to share health data and to create value from it, safely and in the interest of all.
To learn more about the potential of individual data ownership, visit Health Data Collectives