The Download: Tech chiefs miss chance to sell data-sharing scheme

“Why can we do so much for a pandemic like covid — which is clearly a disaster with huge health consequences — but we struggle to do exactly the same things with cardiovascular disease and cancer, diabetes and so much else which are also of pandemic proportions?”

This question — posed by Sir Martin Landray (whose RECOVERY trial has prevented thousands of covid-19 deaths) — was asked at a Health and Social Care Committee hearing into the much-maligned General Practice Data for Planning and Research programme, which was paused indefinitely last week.

Sir Martin raised the question when asked what benefit the GPDPR would bring. His argument — that GPDPR would help the fight against not only covid-19 but the full range of other common conditions prevalent today — cannot be disputed given the fantastic impact that data sharing has had on treating covid-19 patients.

This means the real question is not “should GPDPR happen?” but “how should GPDPR happen”? Unfortunately, despite a stellar line-up of witnesses, the hearing failed to find a meaningful answer.

Obfuscation

In many ways, the committee session aptly illustrated the GPDPR programme’s difficulties in communicating a clear message to the public.

Although being hauled up before a parliamentary committee is not a great look, GPDPR’s leaders had a great opportunity to persuade a group of influential MPs why their scheme must go ahead.

Judging from some of the questions and concerns from MPs, they did not succeed.

Cheerleading for GPDPR in front of the committee were health minister Lord Bethell, NHSX’s director of policy and strategy Simon Madden, and newly installed NHS Digital interim CEO Simon Bolton.

Lord Bethell’s blocking tactics were apparent from the first question: committee chair Jeremy Hunt asked him to respond to three of the most common concerns from campaigners — pseudonymised data re-identification, current type 1 opt-out breaches, and the lack of communication with patients. The minister instead chose to “summarise where I think we are with the programme” and appeared to read a set of prepared lines to the committee which ignored Mr Hunt’s question.

Pressed by Mr Hunt on the lack of communication with patients and campaigners’ proposal to write to every affected person in England, Lord Bethell started talking about “the sequence” in which to build trust in the programme and that he was “not persuaded a letter was the best approach” — without explaining why.

Mr Madden then chipped in to say “engagement is the key word” and outlined four “key phases” for the programme to undertake in its communication and engagement work, which begged the question why on earth this hasn’t been happening in the last three years as part of the preparations for GPDPR?

Back to Lord Bethell, who was asked by Luke Evans MP if GPDPR was a “good project but the government had got its communication wrong?” Instead of stating the obvious answer (yes!), Lord Bethell disagreed but said chiefs had made the mistake of viewing GPDPR as an “IT project”. If true, then it’s not clear how this has been allowed to happen, given NHSX boss Matthew Gould has spent the last two years shouting about the importance of not treating digital transformation projects in the IT silo.

Asked about pseudonymised data, Mr Bolton told the committee that NHSD audits companies to ensure they’re “not using the data inappropriately” — despite NHSD’s own GP data lead telling HSJ last month there is not enough resource to do this properly.

Poor questioning

GPDPR’s representatives were also not particularly helped by some of the committee’s questions.  

Barbara Keeley MP raised a valid point when she asked how the NHS could be confident patient data wasn’t being used for marketing purposes, given firms like Experian Marketing and Harvey Walsh hold contracts with the NHS. This led to Lord Bethell reprimanding her for “smearing the system” with such “accusations”. Ms Keely then went on to undermine her own point by claiming the NHS was “selling” data to marketing firms — a common misconception which campaigners have unfairly used to make the GPDPR sound more sinister. 

Rosie Cooper MP piled in on the Experian issue, stating she was “aghast” that Simon Bolton — whom she wrongly said was CEO of NHSX — wouldn’t know what Experian is doing with the NHS. Mr Bolton calmly explained he could not be reasonably expected to know the details of every contract NHSD holds with suppliers, and added Experian works with various parts of the NHS on a range of projects. 

Other pointless questions included: “What has surprised you most about GPDPR?” (giving Lord Bethell the chance to evangelise about data) and: “How does this affect Scotland?” (it doesn’t). It seemed the MPs had not been listening to some of the genuine issues and concerns Sir Martin and campaigner Phil Booth raised in the first half of the session. 

What did we learn? 

All in all, the hearing ended without a great deal of progress being made on understanding lessons learned from the saga so far and what safeguards should be in place to keep the public confident in the NHS’ use of their data. 

Mr Bolton did reveal NHS Digital is yet to process around 4,000 national optouts, and no one knows how big the backlog is for type 1 optouts (which GPs process). Lord Bethell agreed to think about making optouts statutory and accepted the current system wasn’t ideal, but it didn’t sound like change is around the corner.

GPDPR has been halted indefinitely while improvements are made, which will — in the long-term — undoubtedly make the system better. But time is ticking and, the longer the delay, the longer it will take to develop the kind of innovations from data that have proved pivotal in the battle against covid-19.  

*The Download should point out that HSJ, while editorially independent, is owned by Wilmington Healthcare, which is among the companies with which the NHS shares data.