NHS ‘risks repeat of care.data in talks to commercialise medical records’
- 19 December 2019
The NHS risks repeating the failures of the care.data programme if it’s not transparent about meetings to potentially commercialise millions of medical records, a LCHRE lead has said.
Professor Joe McDonald, director of the Great North Care Record, said “secretive” meetings with big companies to discuss how to monetarise patient data risked jeopardising patient trust.
Healthcare bosses, including NHS England chairman, Lord David Prior, chief executive Simon Stevens and NHSX chief executive, Matthew Gould, met with big tech and pharmaceutical companies in October to discuss potential uses for patients’ personal records.
Papers from the meeting, seen by Digital Health News, estimate the NHS data of 65 million patients could be valued at up to £10 billion a year.
Prof McDonald said: “I worry when we talk about national data lakes and the likes, because we’ve been here before but we don’t seem to learn the lesson.
“There is an understandable drive to make the most of NHS data but when you try and do it on a national basis, the citizen doesn’t necessarily have a diameter of trust that spans to national.
“That’s exactly what happened with Care.data – we went with a big national information sharing project before we discussed it with the general public and they hated it. It set us back five years.”
Prof McDonald also raised concerns that the flagship Local Health and Care Record Exemplar (LHCRE) programme was discussed in the meeting without LHCRE representatives there. GNCR is one of eight LHCRE sites nationally, set up in 2018 to develop regional patient record and data sharing.
“We’ve made a number of pledges to the public about what we (LHCREs) will and won’t do with their data and we need to be in those conversations about how we might get the best out of the data.
“At Great North Care Record we are four years in to working with citizens to establish the trust that we require to be able to use the data sensible, with the appropriate permissions.
“It’s nerve-wracking if the centre do something foolish involving big companies the public no longer trust that we will lose the trust of the public in what we are doing.”
Documents from the meeting seen by Digital Health News revealed plans were discussed for a “single, standardised, event-based, longitudinal patient record” containing patient data pulled together from GPs, hospitals, mental health professionals, demographics registers, prescription records as well as information from the private health sector.
Commercial models discussed ranged from the NHS receiving no fees but instead “receiving a curated dataset” through to a royalty fee and shared ownership or products based on NHS data.
Digital Health News understands that the paper on proposed commercial models for patient data was authored by influential management consultants McKinsey.
Phil Booth, coordinator of privacy company medConfidential, said: “When the companies spend £3bn on exploiting patient data, what will patients be told?
“Any new programme must be consensual, safe, and transparent – will patients have accurate information on which to base the consent choices they have, or will it be as disputed as some recent Government claims about the NHS?”
NHS England have said the meeting was an exploratory meeting and did not represent government policy.
“The NHS takes data security extremely seriously and puts appropriate safeguards in place to ensure information is used correctly,” a spokesperson said.
“We are working with the Department of Health and Social Care to use the information we hold, securely, to deliver benefits to the NHS, our patients and the public – from lifesaving new treatments to more efficient ways of working.”
But they were unable to answer questions on when the standardised record may be create, how patient consent will be considered or how the NHS would benefit from selling patient data.
McDonald warned that the discussions don’t have to be government policy for it to “frighten” the public.
“I just worry that we seem to forget just how easily you can lose trust in information sharing projects,” he said.
Aside from public trust concerns, the level of investment needed to create a singular record is likely more than the NHS can afford, he said.
An initial investment of up to £3bn would be required at the data-curation stage, the documents revealed, using estimates based on figures provided by Sensyne Health. The February 2018 $1.9bn sale of Flatiron Health to Roche is seen by many to provide a benchmark figure for the value of patient data.
Also in attendance at the meeting were NHS Improvement chair, Baroness Dido Harding, NHS Digital chief executive, Sarah Wilkinson and key industry figures including Amazon UK boss Doug Gurr, Microsoft UK CEO Cindy Rose, joint chief executive of System C Healthcare, Markus Bolton.
Sensyne Health, NHS Digital and NHSX were contacted for comment.
5 Comments
the effective and efficient management of data could provode the insight to help prevent psychosis, (y)our nhs needs to realize it is not all about treatment
As ever Joe your right here, but you have probably blown the opportunity for a gong.
The organisation has no corporate memory care.data was an disaster that could have been avoided if those running it had listened to the advice that we and others offered.
You put it precisely “data is there for the asking, not the taking” If attempts to take it continue, these initiatives, like care.data will blow up and we will damage our ability to gain the benefit that the ethical use of patient data can bring and to which patients will agree if we ask them.
I recently became aware of https://www.ethicscharter.co.uk/ which looks like a helpful initiative, but pointless if some ragbag of the great, good and greedy are plotting behind the scenes.
I think Ewan, you and Joe are both wrong, NPfIT delivered some good stuff but it wasted a ton of taX payers money and there was no real accountability for the financial loss of (y)our money (*). I believe in the clinical, operational and financial fragmentation of (y)our NHS (regional health differences and financial accountability) , I believe what is needed is a NATIONAL approach to DATA, a NATIONAL PRPGRAMME for DATA (NPfD) if you like, because that is what is happening in the real world of DATA platforms, the non NHS world. If you think you can network/connect up 1,000s and 1,000s of providers (i.e. OPEN) you are bonkers, that is not right. I also believe like many in the House of Lords that a new independent, data focussed body should run the NPfD (our NHS NATIONAL Leaders should realize that you can not ignore history and be honest, IT was messed up in the past, little has changed, and it will be messed up again if left to NATIONAL NHS Leadership). Please note NHS D takes it orders from NHS E doesn’t it ? Please be honest. As (y)our NHS becomes fully loaded with more and more data being captured from the bottom up and loaded with a load more of (y)our money fed in from the top I am scared stiff that tons of it (the money and the more valuable DATA) is going to be wasted and I am scared for future generations of health consumers. Digitally the NHS offers an extremely uneven service, the entire health and social care model needs a refit.
In the real world tech cosses boundaries and equalizes a service, the opposite is happening in the NHS and that is wrong. If you work in region X and things are going well fine, blow you trumprt but i think all want a NATIONAL Health Service with a NATIONAL EHR. That is whats makes sense and the is what UK citizens deserve.
Thanks Ewan, I wasn’t holding my breath for a gong. I have 2 main concerns, firstly that we are failing to learn the lessons of history and secondly that the culture in NHSX/E/I/D is such that decent people feel more comfortable leaking details of the alleged meeting than advising their bosses that this was a disaster last time around.
I’m not trying to get a gong I’m trying to liberate data so that I can find the best treatment for psychosis by building the trust of citizens in record sharing for research. There for the asking, not the taking.
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