For the @DukeMargolis #RWDEcosystem… how important is it to understand the provenance of the data with respect to the rights of the people the data are about. How were the data obtain, with what permissions and transparency. What was the ‘chain of custody’ - who had it when?
@DukeMargolis What I mean is… should every group working with data be transparent about how the data were obtained … what was its journey… and who provided what consents and when. Is it time to surface how all of the data became available?
@DukeMargolis Another question is… if I am a patient and a company has obtained my data and combined my data with various other data about me from disparate databases… should I be entitled to get a copy of the comprehensive data that they have assembled about me. What rights shoudl I have?
@DukeMargolis For real-world evidence we talk a lot about data quality… but should we also be talking about data ethics? @dramyabernethy @TheLizArmy @hugocampos @ePatientDave @BraveBosom
