Key information for WP7 deliverables
@LuceChiodelliUB , I cannot reconcile the comment above with what I remember from the Milano meeting.
There, you told us that it was important to let the Commission know that we were proactively taking steps to secure the ethics and data protection profile of opencare. In the case of Edgeryders, these steps were discussed mostly here, anyway outside of preparing deliverables for WP7. There are three things that we would like to be in WP7 deliverables:
- [Data protection] It is unclear whether Edgeryders, as a collective blog, has any obligations towards the Information Commisioner's Office, the UK data protection regulator. To be on the safe side, we took advantage of a provision in the Data Protection Act that allows us to register with the ICO on a voluntary basis, thereby putting ourselves in its line of sight.
- [Data protection] We used the ICO's self-assessment tool to gauge our compliance. It seems we are doing reasonably well (test results). Our data protection policies are listed here.
- [Research ethics] We reached out to the Health Research Authority. They answered that opencare does not fall within their remit, because it does not collect information on whether participants are healthy or not. We therefore fall back to opencare's ethics advisors as overseers.
All of the above was duly discussed with, and reported to, @markomanka .