Taking public concern about data sharing to NHS England

Despite a nationwide mail-out campaign, people are still largely in the dark about plans to share their personal medical records, according to reports we have received.
A woman speaking to a man with a clipboard

Almost a quarter of the local Healthwatch network have raised concerns in the last few days over NHS England’s attempts to explain the care.data programme, which they believe has left the public unable to make an informed decision about whether to opt out or not.

Reflecting these concerns, we have written to NHS England boss Sir David Nicholson urging him not to rush this initiative through in his last few weeks in charge, but to delay the April 1 deadline and step-up efforts to explain in plain English exactly how it will work and why it is of benefit to patients.

Almost a quarter of the Healthwatch network raised concerns about NHS England’s attempts to explain the programme

  • Healthwatch York have branded the flyers sent to all households by NHS England as ‘junk mail’ that are being thrown out along with the pizza menus and broadband leaflets
  • Healthwatch Ealing and Healthwatch Stoke are just a few of those from right across the country reporting that members of their local communities are still yet to even receive the flyers despite promises that everyone would be reached by the end of January
  • Healthwatch Bradford and Healthwatch Cambridgeshire have also raised serious issues over the accessibility of an information campaign conducted purely through print media, particularly for those with sight problems, learning disabilities, mental health issues and those who speak other languages

Adding to these serious logistical concerns, we feel that the information provided so far has been unclear about exactly what personal data will be shared and who it will be shared with.

Not even the GPs responsible for registering whether or not people wish to have their data shared seem to be sure about how the new system will work. Some surgeries are asking patients to fill out official forms to opt out, others are simply taking messages over the phone. One surgery even asked a woman if she wanted to opt out her husband, raising serious questions over who has the right to make the decision.

Local Healthwatch in Cambridgeshire and the Northwest have also told us that some GPs are reportedly opting out their entire surgeries, once again denying their patients the right to choose.

The NHS has a duty to ensure the public are fully informed

After a year of talk and endless reports from the NHS and others about the urgent need to involve people more in discussions about how to improve care, this latest initiative shows that patients are still very much an afterthought.  

This is a debate about how the authorities can use very personal information and plans should have been discussed more widely in advance rather than being presented to the public after the decision to share the data had already been made.

We recognise that there are significant potential benefits to giving researchers access to this data, but considering the intensely personal nature of the content, the NHS has a duty to ensure the public are fully informed of the benefits and risks before all of us can make an informed decision about how our data is used.

Anna Bradley, Chair of Healthwatch England, said:

“Once again the NHS has decided it knows best and is ploughing ahead with plans to share this data whether we like it or not.

“To make matters worse, the communications around this have been so poor that we are now in a situation where all of us are about to be automatically opted in to a scheme we know little or nothing about.

“Whilst we recognise that sharing the data could be of significant benefit to researchers, the NHS has a moral duty to consult with all of us and trust us to make our own decisions.”