The CHC programme linked health data to develop a learning health system to improve care for people in the North of England.
To ensure the residents of the North West Coast (NWC) that we were using data safely and securely, the NWC CHC developed a robust programme of patient and public involvement in order to create a civic partnership to engage, educate and establish the trust of people whose data we use.
Stimulating debate with the wider public regarding consent and use of data, the NWC CHC established an active Public Involvement and Engagement Senate (PIES). The role of the Senate was to ensure that the patient’s voice was represented in the region’s health improvement projects and provide feedback on our areas of clinical focus – COPD, epilepsy and alcohol-related illness.
The NWC CHC team supported the Senate to get involved in a wide range of projects including a patient and public survey, co-development of voting polls and a health information preferences consent app. As well as establishing trust, this inclusive approach enabled us to explore issues of consent to share data, to gauge public perception of data sharing and the issues surrounding how these decisions should be made in an informed way, to ensure we promote effective communication of data at local levels and enabling access within and between services and teams and the wider community.