NHS England’s Federated Data Platform (FDP) procurement risks setting back data sharing in the NHS by fanning privacy fears over approach and potential choice of supplier, if the £480m contract were to be awarded to incumbent Palantir.
This was the central argument put forward at a special debate on FDP that closed Digital Health’s Rewired conference last week.
Cori Crider, co-founder of non-profit legal advocacy group Foxglove, which campaigns to make technology fair for all, spoke at the session alongside Marcus Baw, a clinical informatics and GP IT consultant, and a cardboard cut-out OF Palantir’s UK boss Louis Mosley.
Mosley had been due to speak in the debate on approaches to making most effective use of patient data, but later withdrew.
The speakers argued that NHS England has insufficiently thought out its proposed FDP and risks endangering the safety and confidentiality of the personal data of millions of patients if it awards the full tender for the project to US data analytics giant Palantir.
Both Crider and Baw criticised the lack of transparency in the tendering process for the FDP contract, stating that it left Palantir with a clear advantage due to its initial offer during the Covid-19 pandemic to help the government manage Covid data at no cost.
They also argued Palantir’s work with intelligence and security services in the U.S. made it a questionable choice for managing NHS England’s trove of personal health data and suggested that Palantir’s public comments on the process suggested it was largely interested in monetising the data at a later point.
Earlier in the day in his Rewired keynote presentation Tim Ferris, director of digital transformation at NHS England, had stressed that whoever won the FDP procurement would just be providing software and not gain any ownership of the data.
The speakers were also critical of the “vagueness” with which NHS England had thought out and articulated the FDP project.
NHS England also declined to participate in the debate, a decision that both speakers criticised in their opening remarks, saying that there had been a lack of consultation on FDP.
“There has been relatively little debate about whether federated data is the best approach,” Crider said, calling it “inexcusable” that the health service had been unwilling to participate in a debate on the platform’s merits.
With a proposed budget of more than £480 million, FDP “is a very real expenditure of public money by the health service, and there is public concern.”
Crider acknowledged that there was a need to assess and reform the use of data in the NHS, but she expressed skepticism about the rapid advancement of Palantir to “pole position” in the competition to run the FDP, an advantage she attributed to the company’s nurturing of close relationships with politicians and senior officials during Covid.
She said some health service officials who had used Palantir’s Foundry operating system gave it mixed reviews and were doubtful more broadly about the value for money of the proposed FDP system.
NHS England has provided little clarity on how the system would be designed to work or why such a centralised system is even needed, Baw said.
Existing data infrastructure such as One London provide a good example of how to consolidate and manage data at a fraction of the cost of the FDP project, he added.
Crider also cited Open Safely as an example of a low cost highly effective data platform, that proved successful during the pandemic, built on open-source tools.
Concerns about a “closed source” system
There are also concerns about the extent to which Palantir would allow access to NHS data on its system if it were to win the contract.
“I’m very committed to open source [data],” Baw said. “So, it obviously hurts me to see such a big investment in essentially a closed source platform.”
Both speakers said it remains unclear how consent opt-outs would be managed, especially in social care. In addition, Crider said Palantir has suggested that the platform could expand to “other uses and customers” beyond NHS England, something that could “enable the use of patient data that gets way out in front of the patient.”
In January, the FT reported that the NHS may break up the FDP contract into several parts but suggested Palantir was still likely to be the key bidder.
Although NHS England has described the contract for the FDP as a future ‘operating system for the health service’, it is primarily a data analytics platform used to analyse different streams of data. The FDP is not intended to directly support patients’ care.
NHS England officials claim the future FDP will bring together a range of data sources to provide NHS managers and senior civil servants with the insight to make better decisions.
The centralising move comes when the 42 local Integrated Care Systems (ICSs) are meant to be driving local health policy and decisions.
According to NHS England the FDP will track population health and ‘person insight’, care coordination, elective recovery, vaccines, and supply chains.
In a final audience vote the overwhelming majority of the audience voted to say that they were not convinced that FDP offered the best route to achieve benefits to patients.
They went on to then vote in agreement with the statement that any supplier to the NHS should share core NHS values.
Speaking as a patient - I am seriously concerned not just about the potential for a company like Palantir to have access to my data - but also the wider NHS and UK Gov agenda that seems to think my data is for sale under the guise of “its good for all patients”.
It’s my data. I am happy to share it with organisations I trust for clearly enunciated limited purpose that is clearly explained to me and that I then opt into, not opt out of.
And to make this process really closed loop - let me know the results of the use of my data and how i have helped society - because I am far more likely to do it again if I am treated with respect and as an informed intelligent individual.
I could not agree more Geoff. Lessons are never learned, what happened to informed consent, which is the only way to get trust. Hopefully the likes of Privacy International and MedConfidential are on the case, but this is just history repeating itself over and over again.
Link to an interesting video from GovCon re: Palantir here.
I couldn’t open the link Sven?
It is a 348 MB downloadable MKV file - I was able to download it and play it just fine. You might need to intall a video player (such as VLC) in order to play it.
Sven’s whole post has all the letters replaced by xxxx xxx xx xxxx in boxes, not sure how to fix that?
I’ll replicate his post here (with the link):
FYI that link has triggered a security alert in my Trust and a (mercifully brief) period of network isolation for me. Seems unlikely to be dodgy but be aware you might trigger something similar depending on your setup.
I think it is blocked in the UK, I wonder why?
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