Consent and Data Sharing
Your service should not be uploading data to the CORCNexus system for cases where consent to share the CYP’s personally identifiable information has not been given by either the child or young person, or their parent/carer where applicable. The individual responsible for data upload will be asked at point of upload to indicate the proportion of cases that have not consented and for whom their information is therefore not being submitted.
- We are asking consent for some of the child’s personally identifiable information to be held by MegaNexus alongside their questionnaire responses. This is solely for the purposes of linking data (for example, to link data if a child moves between services).
- It is clinicians’ responsibility to ensure that consent forms are completed, and that it is indicated on the patient database where consent is not given. Consent must be opt-in rather than opt-out. We advise clinicians to integrate this process with existing practice, for example by seeking consent with the first appointment letter, or along with the initial questionnaires given to a child or their family.
- You are only required to seek consent once, either from the child if they are considered “gillick competent”, or from the parent/carer. Please see the consent forms and guidance in the Tracking Outcomes Resource Pack Version 1.4 (pages 10-13) in the Version 2 dataset section of the CYP IAPT website. Copies of the consent forms only are also available here:
- Please feel free to use and adapt the consent forms provided - with one proviso: the text of the forms are based on advice from the Department of Health’s Information Governance team to make sure all bases are covered, so please make sure any changes you make are signed off by your own Information Governance Team.
- The consent forms for the project DO NOT replace existing consent forms within your service regarding information sharing or consent to treatment.
- Where consent is not given, you will not upload the data to MegaNexus but clinicians should continue to collect and record all required information for the project. If we identify particular clinical populations or types of service where consent is low, we may make bespoke arrangements to collect your data, in an anonymous form, from your service directly (subject to your agreement).
Information Sharing Agreements (ISAs)
- The Information Sharing Agreement (ISA) outlines the agreement that your service has with MegaNexus, who are the secure data holding company managing data for both PbR and CYP IAPT. The data sharing agreement is not between sites and the PbR project team.
- For Information Sharing Agreements please contact MegaNexus: firstname.lastname@example.org.
- Please note that if your service is a Phase 1 IAPT site, you will need a new ISA for the PbR project. If your service is a Phase 2 IAPT site, the ISAs for both projects can be combined.
- Any questions about information sharing should go to your Information Governance lead in the first instance.