Man of Honour
This isn't about emergencies though. This is about research that benefits everyone.
NHS opt out of your personal data being sold to commercial institution
- Thread starter mattyfez
- Start date
This isn't about emergencies though. This is about research that benefits everyone.
Soldato
That's a bit of a backtrack. If you were talking about the source data, why would you say;
Because that's a bit silly: the source data isn't at all anonymous. People are identified in everything but name (address, NI number, DoB etc).
It's being sold to private sector firms, fixed that for you.
Partly it is but it is also part of a bigger picture. Now how useful do you think the epidemiological data will be with gender, age, postcode (social indicator) stripped from it. Go and look at any study and they will have a targeted demographic otherwise it is meaningless. With a racially diverse population things need to be even more targeted. I fail to see how we can not get better results and a better cost than another abortive and wasteful system outsourced to private companies that systematically have failed to deliver. Sorry, but isn't that what everyone says the NHS should do - more bang for less buck?
Soldato
Gender and age will still be in, as will race. Locality might be (but probably no social demographic indicator), it's not clear.
Isn't the electoral roll one of them?
If you read the design briefs they are suggesting extracting all > stripping > passing on not extracting what is passed on only > passing on. Hope that clarifies why I said that.
Well what they are happy to put out is to be determined and is being discussed but they as my original point have to a) make the information anonymous and useless or b) not anonymous and useful.
This is part of a bigger a roleout of centralised records. However, the usefulness vs cost is debatable and there is the bigger question that we have not a a single big project release successfully yet when it comes to NHS IT systems. Hardly, the best situation is it. With short money we would be better directing out attention where it is needed ie the lack of frontline staff.
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Soldato
To be clear.
If I were to opt out, will I be able to opt in later on?, should the system prove to be secure.
Also, by opting out. Aside from hindering clinical data harvesting/analysis, what kind of benefits am I missing out on?.
If I were to opt out, will I be able to opt in later on?, should the system prove to be secure.
Also, by opting out. Aside from hindering clinical data harvesting/analysis, what kind of benefits am I missing out on?.
Why don't you tell us what you really think?
Why don't you tell us what you really think?
In the words of Ronald MacDonald "Politics is just one giant ass blast"
Man of Honour
I'm no fan of big Pharma but even I can see that yes can be hugely beneficial to society.
This will be a massive benefit to medical research! Such a shame people cant see the greater good and get caught up with paper headlines.
Data like this is already available (at a very large cost) and no one blinks an eye. When the NHS try to bring it together for the good of everyone then people start getting scared? Its all a bit back to front!
Data like this is already available (at a very large cost) and no one blinks an eye. When the NHS try to bring it together for the good of everyone then people start getting scared? Its all a bit back to front!
Soldato
I think the shame rly, rather than people not focusing on the data correlation, and benefits thereof; is that people (we..) have been put in a position where we have to weigh the benefits to all, against the very real possibility that the data collected will be sold without our consent, for purposes that we were unaware of at the time (years down the line, most likely), or worse still used against us, should we require a system of insurance/special care premiums in the future (ala US healthcare system), and so on.
A solid, firmly stated and well publicised set of standards and acknowledgements, with regards to the future sanctity of my (most personal) data, entrenched in some kind of binding law would have gone some way to reassuring me, personally. As it stands, I'll be opting out, at the cost of the overall benefit.
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Census? Electoral roll?
That record that the Nazis made of all the jews so they could commit the holocaust later?
Caporegime
Cant i get in there first and sell my own details ?? £10 a side of A4.
Can you tell me how it will be useful if not all relevant information is given ie sex, age, ethnicity, etc. It's usefulness starts to decline rapidly without context. All you are left then is cross section of a very varied population.
Let's take an example:
You give a company data showing the 5% of people have a certain disease. Now what you want to know then is what is the composition of that 5% ... are you looking at a female or male only thing, is it relevant as age progresses or is it paediatric in origin. What about ethnicity and social factors.
Without context the data is not really that useful.
How about another one: Let's say you look at patients who have had surgery and have been given pain relief (let's say codeine) now you would say get back figures to show that it worked across the population quite effectively. This data would not show it doesn't work in children at all in most cases, that it is highly unlikely to work in people of Turkish/Cypriot origin etc. Therefore, the usefulness goes down and can also lead to wrong conclusions. I use this example because this is what happened - a drug was examined against a large population (codeine) found to work across the population and then the numbers it didn't work on were ignored.
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Soldato
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Precisely, but from some of the replies above it seems some people put the improbable risk of a few targeted ads spoiling their face book page above medical research that can help all mankind.
Associate
I think it's more the likes of insurance companies that upset people, although something would have gone very wrong if advert agencies got their mitts on medical data!
If an insurance company can see a trend in certain demographics/areas, you can guarantee they'll start to charge extra to provide cover for those conditions!