The National Data Guardian, Dr Nicola Byrne has authored a statement on the NHS Federated Data Platform to highlight progress of the programme and address some concerns. The statement covers research into public attitudes to data use and commercial involvement, the value expected from the platform, integrity of decision making, providing credible assurance about the relationship with a supplier, and thoughts on transparency.
The blog highlights previous research into public attitudes on data use and commercial involvement, specifying that the public “generally supports commercial involvement provided that specific conditions are met to their satisfaction”. These conditions include commitment to “authentic” communications; a clear rationale for commercial involvement; that the external organisation can provide trustworthiness; demonstrable public benefit back to the NHS or society; that the public benefit outweighs commercial benefit; and that there are “adequate safeguards against improper use”. HTN covered a previous blog from the NDG on public benefit evaluations for data use in research, planning and innovation here.
The NDG goes on to highlight the three key areas which she believes takes priority to improve communication efforts:
“Show the likely (not simply hoped for) value to patients and the NHS”
The blog states that “for people to agree that procuring software from any commercial company at this cost to taxpayers is worth it, they need to understand what it will do, see the expected benefits, and be reassured that helping the NHS is at the heart of this project.”
The NDG shares a number of key questions that should be addressed, including specifying the programme’s purpose and scope; the nature of each use case; where public choice comes inti play and how data opt-out will work; whether clinical and analytical end users have been involved in designing system requirements; and more.
“Demonstrate the integrity of your decision making process”
The blog notes that the procurement for the platform has attracted public attention due to contract size and ongoing interest in the existing relationship between the NHS and a potential supplier, leading to “strong opinions about the involvement of technology giants in the NHS more broadly”. As such, the blog states, there needs to be a “genuine commitment to transparency” on how decisions are being made and who is receiving public money.
The NDG advises that organisations need to demonstrate that safeguards are in place; explain who is making decisions, how they are being made and on what basis; demonstrate how critical voices are being heard; evidence how changes have been made in response to concerns; and more.
“Provide credible assurance about the relationship with the supplier”
In order for people to make informed opinions on the supplier’s relationship with their data, “it is crucial to present the facts clearly”, the NDG writes. These facts should include what the supplier will be able to access and do with people’s data; the safeguards and limits on that access; “meaningful deterrents and sanctions against any improper use”; and how NHSE will ensure that the platform is “not a black box solution”, meaning that analysts are able to “effectively use the system and understand its workings”.
In addition, the NDG adds, concerns have been shared about vendor lock-in, with the blog noting: “People want to be assured that the NHS will maintain control and that its own workforce will continue to upskill in digital, data and technology”. In addition, it suggests, the public will want reassurance that NHSE “can terminate the partnership as and when necessary, without compromising patient care or incurring significant costs.”
The blog can be accessed in full here.
Earlier this week, we shared an update on the FDP from NHSE’s chief data and analytics officer Ming Tang; catch up here.
A few months ago, we explored the Federated Data Platform procurement in more detail in a paper published by the Faculty of Clinical Informatics (FCI), in which they highlight a list of questions NHS England should be asking to ensure safe and efficient implementation.
Looking at the broader digital landscape, the government published their mandate to NHS England earlier this year, which highlighted expectations for the role of digital across all healthcare services. The mandate goes on to focus on delivering and developing the FDP and how it will look to maximise trust and ICD up-take of platforms and tools.
