13 Feb 2014

Government ‘must act’ to reassure patients over NHS data sharing

An addendum to my blog on care.data, the scheme to link up GP and hospital patient records. The leaflets are supposed to have dropped on to our household mats by now, although mine must have mistakenly ended up in the recycling bin with the gutter-cleaning, pizza-delivering, house-selling offers because I haven’t seen it.

Medical records at Bronglais Hospital, Ceredigion National Health Trust, Aberystwyth, Wales

However, the Royal College of GPs has now thrown a minor spanner in the works by saying that they are worried that the public has not been properly informed about the benefits of, and the safeguards surrounding, the programme.

It does feel a bit late in the day, especially as they say themselves that there is now only seven weeks to go before the national roll out. But they have obviously taken note that some of their own members are worried about the position they find themselves in, having to explain to their patients why it is such a good thing to their patients, without being clear about the safeguards.

‘Need reassurance’

The RCGP Honorary Secretary Professor Nigel Mathers said in a statement:

“The college remains supportive of the care.data initiative in principle, as we believe it will help the NHS improve the quality of care for patients and to better prepare for outbreaks of infectious diseases, such as flu, through for example, the use of shared, suitably anonymised, data to build up a picture of which treatments work best.

“However, we urgently need reassurance about what plans are being made to address current GP and public concerns to restore public confidence in the scheme.

“The government and NHS England need to act immediately, otherwise further questions will inevitably be asked about the wisdom of rushing the scheme through before the current gaps in information and awareness have been addressed.

“It would be a tragedy if something that could have enormous benefits for patient care falls at the first hurdle because of a failure of communication.”

Benefit of patients

There have been repeated reassurances from the government that the system is safe and they adamantly deny claims that insurance companies will be able to access the data.

Indeed, it is true that it would be illegal to sell the data to insurance companies. Whoever has access to it has to prove that it is will be for the benefit of patients.

Yet that message is not getting through to the extent that even now the doctors themselves are saying “do something”.

I am assuming the meetings are being held behind closed doors as we speak. I look forward to a new communication strategy sometime early next week.

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