Hacker News Reader

Comment by adamrneary | Hacker News Reader

The shame of all of this noise is that resources going into medical research today ends up getting spent on data security and building expensive, custom solutions that avoid using servers of a certain type or location in the name of privacy.

Sure, it would be more secure to conduct medical research without using computers at all, but what about all those people dying of nasty diseases? If I had 6 months to live, I probably wouldn't mind these "criminals" trying to find me a cure.

Instead, we have a deafening din of screaming about data privacy and little or no mention of the benefits of the medical research itself. If people could calm down a little bit about Big Brother, these guys could spend more time doing their jobs, helping sick people.

View on HN

Medical data is a great tool but the problem is that these stories are poisoning public good will. There is no point telling people to calm down when they have just learned that records of every meeting they ever had with their doctor were available on the public internet and identifiable to anybody who knows their address and DOB. That is something that people rightly get upset about.

Additionally, it's not like these events are all just accidents or incompetence. The UK government made a policy decision to sell medical records to insurance companies[1].

Also, is it really true that release to the insurance industry is unacceptable to the HSCIC? Its own information governance assessment from August says that access to individual patients records can "enable insurance companies to accurately calculate actuarial risk so as to offer fair premiums to its [sic] customers. Such outcomes are an important aim of Open Data, an important government policy initiative."[2]

[1] http://www.telegraph.co.uk/health/nhs/10659147/Patient-recor...

[2] http://www.theguardian.com/commentisfree/2014/feb/28/care-da...

Not underplaying at all - your point is spot on - but this data only relates to hospital attendances and not GP interactions. Currently GP interactions are not available in the database, and that's the point of care.data.

Sorry. Yes you are quite right.

When I said public internet I was actually referring to the things Ben Goldacre has been tweeting ( https://twitter.com/bengoldacre/status/440475049880195073 ) and I'm not sure which data set he is talking about.

If the various disclosures, legal or not, actual or planned, actually had anything to do with legitimate clinical care or medical research, I think a lot of us would look more kindly upon them. There seems to be little evidence that this is the case, and plenty of evidence that the data was or was going to be disclosed, for profit, to organisations who are not involved in either direct clinical care or legitimate medical research, such as insurers and foreign governments.

Reply on news.ycombinator.com