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How to positively engage patients in data sharing: Lessons from new initiative Share2Care

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Data collected through routine healthcare is about people. People should play a central role in deciding how their data is used, for example for research. This is what the team behind new data-sharing initiative Share2Care believes.

Share2Care wants to make it easy for patients to give consent and choose which data they want to make available for which purposes. You can read more about Share2Care and watch the 90 second film on their website: www.weshare2care.nl

The biggest challenge in setting up a project like Share2Care is: how to talk to non-experts about data, privacy and research. Of course, you have to use language people understand but that’s not enough. The message also has to motivate, inspire and resonate with people.

The Share2Care team learned that certain terms (in Dutch) seemed to resonate more in interviews with patients. For example, ‘delen’ [‘share’] and ‘Innovatie’ [‘innovation’] were both well-understood and had positive associations.

Perhaps surprisingly, reactions to the term ‘Privacy’ were much more mixed. It seems that some people also had negative associations with the word, depending on the context.

 

Share2Care is an initiative of think-and-do tank the Zorgambassade. More results of an ongoing proof-of-concept will be presented on 25th November 2020. Details for subscription options will be shared soon.

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