ConSpire, dodging $cotland health data mining plan
From May of this year 2017 a new Scottish health database (Scottish Primary Care Information Resource) will go live. Everyone is automatically opted in with assumed consent. Local radio stations are playing adverts to make people aware and it was one of these that prompted me look find out more, good job I had the radio on.
The stated mission of Spire
"It is a service that will allow small amounts of information from GP practice records to be used to help doctors’ surgeries, NHS Scotland and the Scottish Government to improve care and plan services. SPIRE can also help with research into new treatments for particular conditions or diseases, to monitor outbreaks (of flu for example) and to develop new medicines."
This for me sounded alarm bells, monitor flu outbreaks (mentioned 5 times in the question section alone). Being hugely suspicious of the flu vaccine gravy train which is touted every year. I certainly do not want to help with that nonsense.
Develop new meds and help with research, this in itself is a good thing. Also stated is that researchers and charity's can apply to use the data. Pound to a penny some cats are going to make a big saucer of cream using my data.
Although the given information states its not a national database, the data is collected and analysed by National Services Scotland (NSS). And from what I can tell there will be 2 versions of this database, 1 internal NHS Scotland where patients names are included and a published one without names.
However you can opt-out and this is exactly what I did today, they of course make it a bit of a hassle to do. So I was automatically opted in and in order to opt out I was required to in person visit my GP and ask to opt out. The receptionist was very polite and helpful. She explained I needed to fill a form out first and then another form would be sent to my house. This should be filled out and returned before I was opted out. From what I gather someone then adds a read code to my patient record that excludes my data from the collation process.
Heres the thing, I would be more than happy to share my data with all these folks and more. If the profits where shared fairly like the licencing of a computer program or royalties payed to musician for using their songs. With each person being paid a prepositional amount each time a researcher or other organisation used their data.
www.spire.scot.nhs.uk/spire.scot
picture linked from http://royal.pingdom.com/2009/12/11/retro-delight-gallery-of-early-computers-1940s-1960s/