Interested in helping to decide how patient medical records are shared?

[lynmynott]

The University of Cambridge is holding an event to ensure that patients have a say in how medical records are shared between healthcare providers, government, researchers and scientific companies?

If you are interested in attending, the event is being held on Thursday, 29 June 2017 at the Cormack Room, University Centre, Granta Place, Mill Lane, Cambridge, CB2 1RU from 10am to 12.30pm. Refreshments will be provided.

The event is free and you can book your place by contacting Karen Hlaba on 01223 254263 or [e-mail]

[humanbean]

If I lived closer to Cambridge I'd be interested in going.

What I dislike is the assumption in the poster that sharing medical records is normal and to think otherwise is odd.

As far as I'm concerned my medical records are private and I want them to remain that way.

I've read research papers written by research groups from around the world. And the data they are using to do their research sometimes comes from the NHS. I don't recall being asked if I ever agreed with this and it infuriates me.

When the care.data fiasco was cancelled because of public outrage I think many people jumped to the conclusion that the problem had gone away. But it didn't.

Care.data was being organised by the HSCIC. And what happened to the HSCIC after care.data was cancelled? It's name was considered to be poisonous. And what is the cure? Change it's name to NHS Digital.

As far as I'm aware collating everyone's medical records is still going ahead, but names (of any organisations involved and the names of the databases) have been changed and everything is now hush-hush. I've read that the government changed the law (or is going to change the law) so that people can't opt out of this.

And government whinging that "but the data is anonymised" is complete and utter crap. They identified people sufficiently that almost any company with personal data could make a good stab at identifying the records with little or no chance of error.

I've done programming work in the past where a company with many different client databases wanted to collate them into a single database. The work I did involved doing that merger. It wasn't that difficult.

The government has said that trying to de-anonymise data will be illegal. What I'm not clear on is how they intend to prevent it, because insurance companies and many others simply won't be able to resist the temptation.

[shaws Administrator in reply to humanbean]

It would be good if you were able to be a 'fly-on-the-wall' and let us know what is being decided about our private, personal, medical history.

[humanbean in reply to shaws]

Sadly, Cambridge is several hours drive away.