In early 2014, we ran an online poll to find out what local people thought about the new care.data initiative. This was an NHS initiative that allows anonymised patient records to be shared within the NHS and also has the potential for data to be bought by private companies. NHS England had informed the public by sending out a leaflet to every UK household. NHS patients could opt out of this initiative by contacting their GP.
Our poll showed the following:
- 62% of respondents advised that they had not received the leaflet (with a further 12% who said they didn't know if they had received it).
- 66% of those who had received the leaflet stated that they hadn't understood the leaflet
- 59% of respondents advised that they were going to opt out (27% were unsure)
These findings were shared with Healthwatch England who shared the findings with NHS England. We were then asked to attend a meeting with NHS England to discuss our findings further. The deadline for this project was then extended by 6 months.