Update to Consenting patients for sharing of data

Published 01 Jan 2022

Update to Consenting patients for sharing of data.

At PASCOM-10 we are keen to capitalise on the brilliant work everyone has done in recording anonymous clinical data and patient reported outcomes.  We now have over 150,000 patient records on the system.

To analyse the data at a national level and report our findings in peer reviewed journals we need to demonstrate that consent has been sought for this purpose at a local level.  PASCOM has for many years asked local users to seek consent and to keep records of that consent locally.

The following statement is an extract from the user guide:

Patients should be informed of, and consent to, data being collected.

Patients must be informed that their clinical data is being collected on PASCOM.  It is strongly recommended that consent be sought from all patients prior to data collection and a record of consent should be kept outside of the PASCOM database. Patients should be informed about why the data is being collected and how any data may be used.  Further to this if you (the user) choose to use the email functionality within PASCOM, specific consent should be sought for the use of and storing of email addresses within PASCOM. Within the NHS consent should be sought but it is advisable to seek further advice on consent from Caldicott Guardians.  The Information Commissioners Office (ICO) also offers detailed guidance on consent for data collection.

To assist the PASCOM-10 team in confirming that consent has been sought, a tick box has been added to the registration page, see screen shots below.  When hovering over the green question mark a further explanation is provided.

Image 1. Screen shot of ticked consent box.

Image 2. Consent ticked with explanation.