| 32 | - In effect this is the same as Intra-NHS data sharing: if we are receiving data the sending site should get us to sign an agreement; if we are sending data, we should create an agreement and get the receiving site it. However, it is probably worth checking all of these with Ewan and his team. |
| 33 | |
| 34 | === Data Access within UHL |
| 35 | |
| 36 | - We are OK to access any data as long as with have explicit consent from the participant. |
| 37 | |
| 38 | === Data Collection Over the Internet |
| 39 | |
| 40 | - This is acceptable as long as adequate security measures are in place (SSL, password protection, firewalls, etc). |
| 41 | - Collecting data from patients directly over the internet is fine as long as it has been approved in the protocol. |
| 42 | |
| 43 | === Sharing Data Between UHL and UoL |
| 44 | |
| 45 | - Sharing of Pseudo-anonymised data between UHL and UoL does not require an agreement. |
| 46 | - However, genetic data may soon be considered genetic data. Therefore, sharing of genetic data will not be allowed without explicit consent (this will depend on the meaning of the LCBRU, possibly). Also, does this mean that combining pseudo-anonymised data from UHL with genetic data will be considered re-identification, which is a big no-no? Ewan's advice on this subject is required. |