2018 is set to be another busy year in the world of patient data.
First up, changes to data protection legislation. The UK Data Protection Bill is currently passing through Parliament; this will help implement the General Data Protection Regulation (GDPR) which comes into force on 25 May 2018. A recent survey by Big Brother Watch found that nearly 60% of people in the UK had not heard of the new regulation, but that is likely to change over the next few months as organisations strive to meet the new requirements for fair processing and transparency. Expect to see further advice from the Information Commissioners’ Office, and increasing scrutiny from the media. For the health sector, NHS England and the Information Governance Alliance are developing sector-specific guidance. Keep checking here for further updates, and we'll post a blog discussing the implications soon as well.
The other big change in the health sector will be the introduction of the new national opt-out, recommended by the National Data Guardian. The opt-out programme team is hard at work on the technical design and implementation, workforce engagement and comms: you can follow their progress here. We hope the timetable for introducing the opt-out will be aligned with GDPR implementation to help both the workforce and patients, with a single package of information explaining how privacy will be protected, and the choices people can make.
These changes are all intended to help build confidence that health data is used responsibly. Another important step is to place the National Data Guardian on a statutory footing. We were pleased to see a Private Member’s Bill to deliver this clear the first hurdle in the House of Commons in December, and hope it will now progress quickly through the scrutiny stages.
There is so much potential to make better use of patient data across the NHS. Initiatives to integrate primary and secondary care records at a local level are essential to deliver better care for patients, but we must remember Wachter’s warning that effectively digitising the NHS will take significant time, resource and culture change. The new Chief Clinical Information Officer (expected to be officially announced imminently) will start work with a full in-tray.
The Government also committed to introduce regional Digital Innovation Hubs in the Industrial Strategy and Life Sciences Sector deal. We look forward to seeing further detail about what these might look like, and how they will support the use of data for research purposes, over the coming months. The new research institute, Health Data Research UK will also be fully up-and-running this year, and should be announcing its initial sites shortly.
On 5th July, the NHS turns 70. Building on the current coverage of the ‘winter crisis’, we can expect lots of debate about how the NHS can sustain another 70 years. Kicking off the conversation was an interview with Sir John Bell, who stated that “AI can save the NHS”. Given how rapidly new digital technologies are advancing, the hype is likely to continue to build; policy decisions and public engagement will need to keep up. We hope the governance and oversight arrangements for ethical uses of data and AI will become clearer over the next year.
And finally, what can you expect from Understanding Patient Data? We are busy preparing our next set of resources, you can find out more about our plans in our first annual report. And watch out for a series of animations that we will launch in the spring, bringing to life how patient data is used in the NHS and beyond.