Over the summer the Government is seeking views from the public on plans for how the NHS will be able to use patient data to improve services and treatments.
In particular they are looking at how the NHS should be working in order to protect your data and how you can choose what your data is used for.
We are working with local Healthwatch to promote the consultation to make sure people have the chance to share their views.
As part of this, we have created a survey to help gather people's views to inform our formal response to the consultation. If you would like to share your views on the proposed consent and data security standards, please fill in our survey.
The 'Review of Data Security, Consent and Opt-out', produced by the National Data Guardian Dame Fiona Caldicott, sets out recommendations for how patient's health and care information should be used within the NHS. The report was commissioned by the Department of Health and received evidence from Healthwatch England and local Healthwatch about the public's views on consent and data security.
Ten new data security standards to apply to all organisations which hold health or care information.
Leaders of health and social care organisations should demonstrate clear accountability and responsibility for data security, just as they do for clinical and financial management and accountability.
A more extensive dialogue with the public
There should be more conversations with the public about how their information is used. They should be made aware of the benefits of information sharing such as researchers making breakthroughs in life-saving medicines to regulators spotting quickly when things go wrong.
A new opt-out for those who do not want their information shared
The review recommends a new opt-out for people who do not want their confidential information to be used for purposes other than their direct care. Dame Fiona has reaffirmed that whether people opt out or not, they should be reassured that their health and care information will only ever be used if the law allows and never for marketing or insurance purposes, unless they separately consent to this.
Responding to the report our Interim Chair, Jane Mordue, said:
“People tell local Healthwatch they recognise the potential life-saving benefits of sharing their data, putting it in the same terms as giving blood or registering as an organ donor. At the same time they understandably want to know who will have access to their medical records and for what purposes.
“Dame Fiona’s work has helped set out the foundations for how the NHS should use data, but with the Government set to consult over the summer it’s now up to all of us to take part in a national conversation about how information is shared to help build a health service fit for the 21st century.”
Have your say
Tell us what you think about the proposed consent and data security standards. We will use what you tell us in our formal submission to the Government's consultation.
Alternatively, you can share your views directly by responding to the formal consultation by 7 September.