The biggest stories in the NHS from Wednesday
- Today’s must know: High Court told ACOs will unlawfully ‘usurp’ CCG powers
- Today’s talking point: Leaders of alliance trusts agree to full merger
- Today’s inspiration: Trust out of special measures targets outstanding rating
- Today’s risk: Large CCG’s deficit spirals to £42m
This week, several more pieces of NHS data sharing puzzle fell into place.
Not since Care.data have national leaders dared to be so publicly ambitious, and enthused about using patient data and the potential of big data to cure the service’s woes.
The gamble is that by stressing “local” patient information sharing for direct care, and kicking the can on national collections and the terms of commercial access further down the road, the public and clinicians will buy in this time round.
The first puzzle piece this week was the first three “local health and care record exemplars” announced on Wednesday.
National leaders hope these will be just the first in an interwoven quilt of such records covering the country, containing between them a detailed record for every citizen.
The term “local” is a stretch for these records, which will cover dozens of health and care organisations and millions of citizens. The London record alone will cover 8 million people.
It is these records that will be the meat to NHS big data grinder.
On Friday, two more jigsaw pieces will be put in place: the snappily titled general data protection regulations (GDPR) and the national patient opt-out.
The EU-wide GDPR will make organisations, including within NHS, more accountable for the personal information they collect, while the opt-out will allow patients to be left out of sharing their NHS identifiable data beyond direct care (though probably not in all instances).
Speaking to HSJ this week, health minister Lord O’Shaughnessy described these steps, and several others aimed at data security, as public reassurance, tools that demonstrate to the public that the NHS can be trusted to handle their confidential records.
There are potential trip wires in both these assurances (Care.data too eventually acquired opt-outs), but the more difficult conversation is yet to come.
Towards the end of the year, the ball will get rolling on a new set of regional patient data centres (“digital innovation hubs”). Each hub will plug into one of the aforementioned records and serve that information up as big data for academia and industry to sift through.
The exact conditions under which patient information will be accessed by industry for research is still being developed, including how the NHS gets a share of any commercial benefit derived from that information.
Lord O’Shaughnessy told HSJ identifiable patient data, with proper protections, could be used for commercial research in some instances, but the details were still being ironed out.
“It’s not shifting data out or selling data on, it’s about providing access to use data to look for trend and develop treatments,” he said.
After the reassurance, the second plank on the campaign to get the public onboard will promote the benefits of sharing their data, from improving patient safety to medical breakthroughs.
Convincing the public and avoiding nasty surprises on data sharing will be crucial to avoiding the mistakes of the past.