It’s good to see that common sense has prevailed, and the roll-out of care.data has been deferred until Autumn – primarily, it would seem, to allow time to make absolutely certain that all patients have been made aware of the plans to do so.
The media, privacy lobby groups and, most notably, both the ICO and The Royal College of General Practitioners flagged their concerns that communicating the NHS data sharing plans with patients had been inadequate, leaving many individuals throughout the country unaware either of the plans to share their sensitive, confidential patient data, or indeed of their right to refuse to participate (see more here about how and why your patient data is to be held in a central NHS database).
There has been some attempt to inform the public – primarily by GPs (mine was excellent, providing information and opt-in / opt-out forms with repeat prescriptions; issuing leaflets and showing posters in the surgery; and showing information on the website ). The NHS distributed some 22 million leaflets which were apparently delivered in January / February, but there has been a great deal of criticism of the leaflet’s creative approach, which has been described as bland … appalling … one-sided … and more. I have to say, I never received it … or if I did, I threw it away unread on the assumption that it was “junk mail”.
I was interested to read what the Royal College of General Practitioners think, and of their own strong desire that GPs, patients and the nation are all properly informed and able to make their own decision whether to support the development of the NHS database or opt out. http://www.rcgp.org.uk/news/2014/february/college-welcomes-decision-to-delay-care-data.aspx
On the subject of making people aware … I find it quite fascinating to watch the government’s delight in using broadcast channels like TV and radio to promote themselves when it suits them. Yet they seem curiously reluctant to use these same channels to inform the public of an issue as significant and important as the sharing of our own sensitive and confidential medical data.
However, it is quite clear that the NHS must now decide how it will ramp up its communication campaign before the Autumn in order to satisfy the public, the ICO, the RCGP and the media. Only then will it be possible for the launch of care.data to take place.
Data Compliant Ltd provides advice on data compliance, data security, and runs training classes and workshops. If you or your business have any concerns over your data being compliant and secure, please contact Michelle or Victoria.