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Do we want our intimate health details kept on a central database?

Published date: 09 January 2014 |
Published by: Rhian Waller 
Read more articles by Rhian Waller  Email reporter


 

FROM this spring the health data of your friends and family over the border in England may find its way onto a massive database.

In England the care.data project will see GPs feed people’s partly-anonymous information into a “bank”.

The data trawl is being hailed as a revolution in the use of information to plan and improve healthcare.

But it has also been condemned as a Government-backed intrusion into people’s privacy.

But do we want to see this rolled out in Wales?

Two local GPs say the measure could drastically change the way we deal with disease, but that privacy would have to be paramount.

Dr Eamonn Jessup, chairman of North Wales Local Medical Committee, whose practice includes parts of Ffynnongroyw and Holywell, could see benefits and drawbacks to the plan.

He said: “A completely different system has been developed in England as opposed to Wales. At some point, some sort of digital database is going to have to be developed, but the care.data project has not been so straightforward (the database has been beset by delays – it was scheduled to be launched last year).

“Hopefully Wales is hanging back to learn if anything goes wrong in England, and then we will move forward.”

In practical terms, the close proximity of the England/ Wales divide, which means residents in Wrexham and Flintshire who travel to surgeries or health hubs like the Countess in Chester for certain treatments, could complicate matters.

Dr Jessup said: “People in the region are not exclusively treated in Wales and England, so it will be interesting to see what will happen if someone crosses the border for treatment.”

The Welsh NHS has made digital innovations over the years – night surgeries can now recover daytime records at a click of a switch, and medical details can be updated and shared up to the minute – but none of this is centralised and potentially open to non-NHS bodies like the information stored in care.data project.

The idea is that patients in England can opt out by simply telling their GP they do not want to be involved.

If they remain in the scheme, their condition and history will be transformed into a kind of “clinical code”, stripped of “potentially sensitive” information like abortions and relationship problems, and then sent to the Health and Social Care Information Centre (HSCIC).

The details held at what HSCIC refers to as a high level of security, will include the patient’s unique NHS number, their date of birth, postcode and gender, which will be partially anonymous.

But why share medical data in the first place?

Dr Peter Saul, of the Health Centre on Beech Avenue in Rhos, near Wrexham, described it as the “Tesco Clubcard” of the NHS.

He said: “Supermarkets use clubcards so they can better sell their products. If they found there were a lot of vegetarians living in Mold, they’d up the number of vegetarian meals available in the area.

“The benefit of this would be to allow the health service to respond in a proactive way to the needs of the local community.”

More than just getting the right levels of medicine in place, a health database could give medics the opportunity to monitor and even predict conditions.

Dr Saul said: “It represents a really fantastic opportunity to look at the outcomes of treatment and the prevalence of disease and it would generate a lot of positive information and potentially give a much clearer image of the state of health of the nation.

“You could have targeted campaigns in areas where people had poor diets, for instance.”

Dr Jessup said an integrated system could help improve treatment.

He said: “There are huge benefits. You could map areas for different problems, such as checking on cancer rates in a particular postcode, or develop a system that could pinpoint a particular health issue.

“In diseases like bowel cancer, where the survival rates differ quite a lot, you could track patients through different forms of treatment to find out what was consistently effective, while taking into account other variables.”

There are downsides though – the most obvious of which is whether people would be comfortable with having their details accessed.

Some doctors are concerned the innovation in England may damage doctor-patient relationships.

Dr Saul said: “Anonymity when speaking to a doctor is vital. People won’t talk about things if they don’t think they can trust us. If someone had a sexual health concern and they were worried that the information would be passed on in some way, they may not tell us.

“Then, of course, they wouldn’t receive treatment and the problem would spread.

“We can’t help people who don’t trust us. It’s a two-way street.

“The worry is that the Government doesn’t have the best record when it comes to not prying into people’s lives.

“I’d be all for it, provided it really is secure and it would be anonymous.”

Health bosses in England have also not discounted the idea that health information could be sold on to third-party companies in the future.

Dr Saul said: “I hope it wouldn’t be sold on for marketing purposes, but my understanding is that the data would be secure and no one could be personally identified.”

Dr Jessup again saw some virtue to the idea.

He said: “Confidentiality is critical. It’s right at the heart of it. But, in the future, I could see why it might make sense for the NHS to sell information on – it needs money, desperately, and this could provide extra revenue.”

For now, care.data remains an entirely English initiative.

A Welsh Government spokesman said: “NHS Wales works in a completely different way to NHS England and does not have any current plans to roll out the NHS England care data central database.”

For more news from across the region visit newsnorthwales.co.uk

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