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Scientists launch campaign to discourage patients from opting out of care.data

A group of leading health research organisations have come together to launch an advertising campaign aimed at discouraging patients from opting out of NHS England’s flagship data-sharing scheme.

The campaigners have said that ‘people will die’ if too many patients opt out of the care.data scheme, which will see patient records shared both inside and outside the NHS.

The campaigners, which include Cancer Research UK, Diabetes UK, The British Heart Foundation and Arthritis Research UK, said they fear patient opt-outs could be ‘harmful’ to science.

They will warn the public that opting out of this program could undermine the ‘safe, effective operation of the health service’ and that without access to this data for research it could lead to the death of patients.

The advertising mission is being funded by the Wellcome Trust and has been launched to coincide with NHS England’s public awareness campaign ahead of the launch of care.data from April.

It will attempt to convince the public that centrally collecting the data and making it making it available to academic, charitable and commercial organisations is necessary for NHS commissioners as well as the UK life sciences sector.

It comes as Pulse has reported that at least two GPs have already opted all of their patients out of the scheme amid patient confidentiality concerns, while others are planning to do so.

A campaign statement says: ‘Patient records are an extremely valuable resource for research. The information contained within them can be used to understand the causes of disease or to detect outbreaks of infectious diseases.’

Speaking at the launch of the campaign, Dr Peter Weissberg, a cardiologist with the British Heart Foundation, said widespread health data sharing was essential to making medical advances and that without it medical side-effects of drugs and behaviour may go unnoticed for longer.

He said: ‘We can carry on making [discoveries] without, but we will make them extraordinarily slowly and people will die in the interim. Not only will they die as a consequence of habits and behaviours they have, which we haven’t understood properly,[ but] they will die as a consequence of well-meaning attempts by doctors…[who are] treating patients on a daily basis on what we call the evidence base.’

‘[For example], antihistamines, we were dishing them out like smarties to people with hay fever until eventually the penny dropped that some people were dying as a conesequence of heart-rythmic disturbances.’

Also speaking at the event, Professor Liam Smeeth - a north London GP who also heads the non-communicable disease epidemiology at the London School of Hygiene and Tropical Medicine - said he understood confidentiality concerns but thinks patients opting out of sharing their data presents a bigger risk.

He said: ‘I think there is a risk of people opting out of this kind of thing. These are data that are absolutely necessary to keep the NHS up with the times, to develop new inventions, or to be safe and effective, so we know what’s going on in the health service. It’s completely necessary. I think people opting out, saying “no, no I don’t want to share my data even if it is anonymised and confidential”, it is about trying to convince people that that has a harmful effect.’

‘There are people worried about confidentiality but I am hoping there aren’t people sitting around saying we don’t need to do this because we don’t need this data.’

The care.data scheme will begin extracting data from patients records in March with full roll out expected in May. Originally designed to link patient information across primary and secondary care for the first time, the scheme was expanded last March to allow third parties to apply to make use of data from within the record.

Sharing data save lives campaign - Wellcome trust

Readers' comments (6)

  • Why do they need to identify patients? Anonymised data would do the same job. Professor Liam Smeeth might treat the data in an appropriate way but once the data has gone out to the private sector in identifiable form it is only a matter of time before it is lost stolen or sold for illegal purposes.

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  • I've opted out, and nothing in this article would make me change my mind. I do not trust the Government not to sell my data to third parties, where it could be misused.

    If it was anonymised at source that would be different...

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  • I've opted out and so have other doctors on my practice list. I would not trust any government with this data. I would not be objecting if annonymity could be guaranteed.

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  • And exactly why do they need individual identifiable data to do any of that.?

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  • Like the previous commenters, I've also opted out.

    I would have to echo this: "exactly why do they need individual identifiable data to do any of that.?"

    I'd add that from the GP Practice viewpoint, it would seem statistically a lot less risky to

    a) be one of several thousand Practices that NHS England might have a go at (if I opted-out all my patients),

    than

    b) pray that not one of my several thousand patients might sue me if I broke the law by breaching the Data Protection Act and allowed their personal data to be extracted without their explicit consent and opt-in.

    You take your chances either way I suppose.

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  • This has been handled so badly by NHS England that no one seriously trusts the motives or believes anything that is expressed here. NHSE had an opportunity to properly go to patients and ask permission. Instead they chose to tell GPs it was their responsibility to ensure people consented. We therefore ran a campaign in our practice (when it seemed we were on our own) to tell our understanding to patients (which may have been limited because NHSE were so crap about explaining things or taking any kind of responsibility). The damage is done. Most of our patients have opted out and are continuing to do so. I imagine many colleagues will have done things in their own way.

    No data coming out will therefore have much value as all practices have been left alone to make decisions about how to pass this information on. Bias - Bias - Bias for any studies.

    Once again NHSE have demonstrated a lack leadership or coherent policy. They seem to think that throwing their weight around will get them what thy want. Think again!

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