Recently, Castor founder Derk Arts and MyConsent were nominated for the Amsterdam Science and Innovation Award 2016. Below, Derk shares his thoughts on MyConsent and how the collection of patient research data can be revolutionized throughout the world.
Every day, many patients participate in new medical trials. By providing their data to researchers, they help improve healthcare worldwide. However, data from previous trials is rarely reused due to ethical issues. This is despite the data still containing valuable information for future research.
We can prevent unnecessary medical trials, reduce costs and improve healthcare by using research data to its full potential. By being able to combine and enrich multiple datasets from previous studies, we will be able to make the most out of every single medical trial that is performed throughout the world.
Legislation regarding reuse of data only allows for sharing of coded (pseunodimized) data, making enrichment and expanding of these data impossible. This limits the possibilities for reuse of data. Furthermore, researchers can’t use valuable EHR data for their trials, as patients have no way of consenting for its use.
To ensure future reuse of research data, and to allow study participants to decide how their data can be (re)used, we have created MyConsent: an online platform that will revolutionize the way control over personal data is managed. It offers the study participant an easy to use portal where consent for usage of their (research) data can be managed.
We want to put the study participant in control of their data. This will allow a researcher to easily ask for consent and use it in a way that is allowed within the current ethical and legal framework.
Help unlock the full potential of medical research data! Share this page and vote for MyConsent for the Amsterdam Science & Innovation Award 2016! Thank you!