Incorrect information are a real threat to patients and they are everywhere. In our experience, knowledge is the only way to keep people safe. 

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However, it's not quite as simple as 'right' or 'wrong'- it is rather about knowing how to find out what is right or wrong, something we summarise under the term of agency. 

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Patient information thereby plays an important role: effective patient informations allows patients to continue to learn by themselves, without being dependent on a single source of information.

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MPNE was parter in the Horizon 2020 project Share4Rare and within the project developed a simple tool that allows to evaluate whether information is suitable to increase patient agency or not.

 

We called it V2A2- standing for the 4 factors that we consider important:

1- validity

2- verfiability

3- accessibility

4- agency 

 

and you can find out more about the tool and how to use it here. 

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