Consideration and representation of the patient and public voice is critical in all aspects of the UK CARDIO-IMID Partnership. It is only through consultation with the communities we serve at every stage that the Partnership can be leveraged as a powerful tool to address the myriad unmet needs in the CARDIO-IMID space.
The patient voice will be represented in all aspects of the Partnership through the activities of a dedicated Patient Advisory Group (PAG). The overall remit of the PAG is to provide patient, carer and lay feedback to the Executive Steering Committee (ESC) and Workstream Management Groups to ensure that the views of patients and the public are integral to UK CARDIO-IMID decision making.
In particular, the PAG will assist, advise and challenge the ESC to ensure that:
- The patient and public voice is central in the planning process for UK CARDIO-IMID initiatives.
- Patient and public views are invited, gathered and acted on as part of shared decision-making processes.
- Decisions relating to patients and the public are taken in an open and transparent way.
In addition to the PAG, we’re also seeking to engage the wider patient partner community to establish a UK CARDIO-IMID PPIE network. We hope to leverage this network to distribute a PPIE newsletter to inform on progress and activities within the Partnership, surveys to collect wider input on key issues and PPIE events to bring the national patient community together in the CARDIO-IMID space.
