Patients and end-users will be involved in the project via a project-specific inter-NHS Trust Patient, Clinician and Staff Involvement Group (PCSIG).
This group will be supplemented by Clinical Coding staff (two senior clinical leads at King’s College Hospital (KCH) and Guy’s and St Thomas’ NHS Trust (GSTT). The purpose of the Involvement Group will be to:
- Consolidate input and feed back to existing patient research committees of each Trust partner (CRIS, KERRI, GERRI and UHB/PIONEER) facilitated by the PPIE Lead
- Support the design of communications and broader engagement on the use of data (patient and public members)
- Help to shape the approach to insight-gathering and critical reflection (staff members) Specific activities that the PCSIG will lead on the following engagement and involvement activities include:
- Obtaining insights through surveys together with engagement with existing PPI organisations like
Understanding Patient Data to inform the production of communication materials
- Co-creation of a patient and public-facing NLP toolkit, so that different patient groups can advise on local CogStack projects, as this new technology is embedded within new NHS Trusts across the country. These can be used by patient groups and Health Research Authority Research Ethics Committees, to evaluate the patient benefit and potential risk of any proposed project. The NLP toolkit would be freely available for all.
- The overall Programme Management Board will have a representative of the PCSIG to ensure PPI is captured within the project governance.