Patients need convincing the new data strategy is safe to prevent them opting out

25th June 2021 about a 3 minute read
 “Trust and transparency are crucial messages in this strategy, but these will need to be backed up with action.”  Greg Allen, FCC Chief Executive

At Future Care Capital we welcome NHSX’s ambitious new draft data strategy published this week.  It’s a big step forward on the back of a very tough pandemic. 

It also prompts important questions. How will the strategy enable a future fit-for-purpose health and social care system? How can tech and data-free up the workforce, which is currently under significant pressure – in terms of capacity and stress? 

These are issues FCC is exploring.  It is also important to find a way to translate the gap between using data for management and planning into the development of data-driven technologies and solutions to meet need.  At FCC, we are leading a nationwide data analytics research project, in partnership with the Health Foundation.  This ‘Community of Practice’ for social care data analytics is an example of practical action and engagement.

But the questions of trust and transparency are key. How do we help people gain confidence about access to and use of their data, as citizens and patients?  This is also accentuated by the wider context of cyber security as a global threat and elements of fear associated with this.

Matthew Gould, NHSX’s chief executive, said they had learned from the pandemic to ensure patient privacy would be better protected. I believe we need to build on Matthew’s messaging to get his assurance across and allay the public’s fears by informing them fully about how their data will be accessed and how it will be used. 

It’s good that the strategy retains the ‘The Five Principles’ to help the NHS realise benefits for patients and the public in data partnerships.   And that it commits the NHS to publishing its first ‘transparency statement’ setting out how health and care data will have been used across the sector by 2022.  That’s a big pledge, and should be publicised more to help gain people’s trust. 

The H&SC AI strategy comes out later this year and it will be important to consider how the new data strategy links with that to ensure safe and effective tools are being developed and deployed in the sector. 

Control of patient information (COPI) notices have also been discussed, mostly in a positive light in the strategy, but there is not a huge amount of detail about how long they will be appropriate and how frameworks of governance tools need to evolve over time. 

Lessons seem to have been learned from the government having to extend the 23rd June deadline by two months for patients to opt out of GPs’ handing over their data to NHSX, because of campaigners’ complaints about the shortness of a six week online only consultation.

The public will now be able to engage through a range of channels and by attending events before a final version of Data saves lives: reshaping health and social care with data is published in the summer. 

We hope to see more and more evidence of growing confidence in the general public, but this will only come if the reference to trust and transparency in the draft strategy is backed up by clear demonstration of action by the government.