Connected Health Cities established an active public involvement and engagement Senate in the North West Coast to ensure the patient’s voice was represented in the region’s health improvement projects.
Members represented a diverse cross section of people including professionals, retirees, patients and healthcare workers.
They were upskilled on aspects of healthcare data use and information governance, and encouraged 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.
Data sharing survey
The Senate helped to create a survey to discover people’s views on sharing their health data, ensuring that the questions asked were those which they would want to be asked if consent to share their data was sought.
The survey took place over three months in 2018 and was used when engaging with patients and citizens including in hospital clinics, GP surgeries, breathe easy groups and public events including the iLinks Innovation Conference, NHS Expo and at shopping centres.
Insights were gained into how and what data patients would be prepared to share.
Epilepsy pathway impacts
- 9% of those questioned had registered for access to their electronic records at their GP surgery, but of these, only 21% had used it and reported that it was simpler to order their prescription in the surgery or to ring for appointments.
- 82% of those asked said they would readily share their healthcare record for research but would prefer to remain anonymous with only 18% refusing to consent to share their data. When asked if they would agree to be identified in research this figure dropped to 70% agreeing to share their data.
- When asked if they would share their data with commercial companies including dentists and opticians, only 61% said they would consent to share their data.
The Senate co-produced a wire-frame or ‘wizard’ for consent to share data for iOS and Android health apps.
They worked with nationally recognised and industry partner ORCHA to produce a set of carefully curated questions to enable people to select their data sharing preferences.
Following successful completion of the project, the wizard has been adopted as part of the consent process for two regional projects with a view to further roll-out in the region.