John Black, who has COPD, explains why data sharing is important and will improve care. John is a member of the Health Innovation North West Coast’s Public Involvement and Engagement Senate.
Making the public aware and an integral part of our work is essential. We need to understand data information sharing preferences for our patients and the wider public.
We have created a sharing environment that enlists the trust, and active involvement, of NWC citizens. Our Public Involvement and Engagement Senate (PIES), is actively involved with work in helping us understand the information needs of the public in relation to this work.
We have carried out additional outreach with to Breathe Easy Groups, alcohol service users at The Walton Centre, and with people living with Epilepsy.
In addition we have carried out a survey in our region and participated in a Citizen’s Jury which was led by the Connected Health Cities Hub.
We are developing a case for ensuring that patients and the public are consulted and fully aware of the different uses of data in the learning health system.
