We Are: an innovative ecosystem for healthcare data
The We Are partnership guarantees that civilians can share their healthcare data securely. With an innovative ecosystem, we give them full control and include them in decision-making about the platform that manages their data. We want to make it easier and safer to share data that is vital to research or the development of new custom services.
Handling healthcare data transparently
The We Are partnership wants to increase the trust that civilians (and patients) have in data-supported research and development. We want to do so by focusing on transparency, security and control.
Healthcare data of civilians, consumers and patients is important to many organisations:
- The government collects it for policy-making
- Companies use it for the development of new products, marketing and sales
- Hospitals, universities and knowledge institutions use it for research and innovation
Using this data cleverly leads to new insights, valuable innovation processes and better medicine and healthcare. Big data allows us to better understand who’s at risk for a disease and who would benefit from which treatment. When we bring various data sources together, invaluable opportunities for research and development arise. However, all data must be handled extremely carefully.
And that’s where things tend to go wrong. Those who collect and manage data rarely share them with others, and there’s little transparency about what happens with the data.
The subjects of the data are rarely truly in control of their data. The current technological ecosystem does not yet take that into account.
An active role for civilians and patients
We Are aims to use an innovative ecosystem to actively involve the patients and civilians so they can contribute to research and innovation as full-fledged partners. Mutual trust is, in that case, indispensable.
The We Are partnership creates a guideline for how we should handle healthcare data. First and foremost, the data has to contribute to an improvement in health, well-being and quality ol ife. We Are wants to create a system that:
- makes civilians feel in control
- allows civilians to manage their own data
- handles data transparently
- allows civilians to choose which data is used and by whom (anonymously or not)
- gives institutions and companies new opportunities for research and development
- collaborates with existing platforms to share data and provide services
- combines ethics, sustainability, transparency and innovation to serve society.
