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.