Care.data is a data sharing scheme that will see GP surgeries send their patient records to a central NHS database as well as to some third parties such as charities and private healthcare bodies in an anonymized format. The aim is that the information will help better plan healthcare and aid research.
Its launch is being publicised by a Government DM campaign, which will see every GP registered person sent a leaflet explaining why “better information means better care”.
The leaflet will also explain that if you are uncomfortable with your data being shared you can opt-out.
As you might imagine, the scheme has already led to a colourful exchange on its rights on wrongs.
This week, health research bodies such as Cancer Research UK, Diabetes UK and The British Heart Foundation will launch a DM campaign pointing out the consequences of too many opt-outs.
Conversely, data protection campaigners have tub thumped about gross intrusions into privacy.
Serious and important stuff. So, why, just three months from the beginning of data extraction and five months from full rollout will the vast majority only just hearing about it? And why take an assumptive position that people are OK with the scheme unless they choose to opt out?
A change as fundamental as this needs to be communicated as audibly, as often and as widely as possible. A booklet will also only be effective as part of a multi-channel marketing campaign addressing concerns as well as communicating the benefits of the initiative. This is particularly important given the opinions about “junk” mail many hold.
Secondly, adopting an opt-out approach risks greater resentment at a later date. Allowing for an opt-out is one way to achieve a greater number of participants – many are unlikely to find or make the time to choose to say thanks but no thanks.
What you are likely to be left with is a bunch of people who will slowly begin to realise the implications of their failure to opt-out and therefore be left feeling a little sore as a result.
Inviting people to opt-in will at least leave you with a more willing group.
I wrote last week data transparency should top marketers priority list in 2014 given the public’s heightened awareness and mistrust about how data is being used and in some cases abused.
I also noted that currently public sector bodies like the NHS enjoy significantly higher levels of trust among consumers than private sector brands when it comes to willingness to share data.
Government must tread carefully or put that trust at risk.