Data is the lifeblood of research but access comes with multiple challenges including scale, ethics and data protection.
There are a myriad of rewards for solving these challenges, as accelerating access to data is key to speeding up the development of treatments, medications and vaccines, as well as improving effectiveness and safety.
The Covid-19 pandemic putting a renewed spotlight on these challenges has inspired digi.me to launch the Data Donor programme to help accelerate progress towards effective treatments and new cures.
Capturing personal data at scale by linking directly to those providing it is key to ensuring both consent and accuracy. This is also at heart of work digi.me has been doing for a number of years in the research community, including with major pharmaceutical companies, to help develop patient and citizen-centric approaches to research and data.
Covid vaccines have been developed and approved for mass use at an unprecedented rate in the past year. As they are administered to millions of people, there is a need to understand their full effectiveness outside a trials environment. This requires Real World Evidence (RWE) from individuals.
The Data Donor initiative, powered by digi.me’s data wallet technology, is helping to accelerate access to such data, including medical records in multiple jurisdictions, self-assessment reports, and other key indicators.
Julian Ranger, digi.me’s Founder and Executive Chairman, said: “We’re very excited to announce the Data Donor initiative, which over the coming weeks will allow researchers and individuals from around the world to come together for the greater good.
“Digi.me’s founding vision was empowering citizens with access to their personal data, to use and share as they see fit, and I can think of no more important use for this than joining the global effort to get on top of this pandemic and allow the resumption of a more normal life worldwide.”
Digi.me’s privacy-centric technology is already approved for medical record access in jurisdictions including Iceland, the Netherlands and England. It supports systems and standards such as EMIS, Epic and Cerner using HL7 FHIR, CDA, Blue Button and even proprietary formats.
While the Data Donor initiative is relatively new, things are moving quickly and more information will be available on the website in the coming weeks.
Individuals can register their interest to hear more as the initiative develops, and will be notified once it is ready to start taking data donations.
If you are interested in becoming a data donor or partnering with us, please register via the Data Donor website to find out more.