NHS data platform could damage patients’ trust • The Register

As the UK government plans to launch procurement for a national patient data repository, the legal custodian of NHS data has issued a coded warning about trust and transparency in the use of health data.

Late last week, Dr. Nicola Byrne, the National Data Guardian (NDG), said the forthcoming competition for the Federated Data Platform – billed as a ‘must win’ for US spy-tech firm Palantir – puts the patient trust issue in focus in handling the NHS with its data in a ‘sharper focus’.

She blogged that the NHS had “collected comprehensive cradle-to-grave information on tens of millions of people [UK citizens]regardless of our social and economic circumstances or our ethnic origin.”

“This repository of sensitive data is a national treasure – our shared national treasure – that must never be compromised or neglected because its collection is based on our trust,” she said.

It is estimated that UK patient records could be worth £9.6 billion ($11.4 billion) a year to pharmaceutical and healthcare technology companies due to the unique position of the NHS.

The cache is also said to be valuable to the NHS itself as it seeks to improve efficiency and recover from the strain of the COVID-19 pandemic.

“The value of our data will only be realized when it can be organized in a way that the NHS can put to good use to improve treatments, services and ultimately our health and care,” said Dr. byrne

“Sealing this precious commodity in a vault where it cannot be used would render it worthless. However, making the data available in a way that damages patients’ trust would be counterproductive. If people lose confidence in how the health and care system is handling their sensitive data, data things will fall apart and plans for data usage will not endure.”

NHS England, a non-departmental body of the UK government, will start delayed raising of £360 million ($427 million) for the Federated Data Platform (FDP) in the coming weeks, according to documents shared with potential bidders .

“The importance of getting the balance right comes more into focus now that NHS England is beginning to encourage companies to apply to deploy a federated data platform. This ‘ecosystem of technologies and services’ will provide decision-makers with reliable, real-time insights into how care is being planned and delivered,” said Dr Byrne.

While she said she wholeheartedly agrees with the aims and ambitions of NHS England’s Liberal Democrats, “this data program needs to avoid common pitfalls of trust and transparency that have thwarted previous initiatives in this area.”

The recent history of the NHS has been marked by difficulties in gaining public trust in the exchange of patient data between general practice doctors – most of whom are independent contractors – and the rest of the NHS.

A project to extract data from GP records and transfer them to a central repository for research stalled last year as health leaders failed to win the trust of patients and the medical community. Attempts to restart the General Practice Data for Research and Planning (GPDPR) project, run by the soon-defunct NHS Digital, have so far failed.

“Public trust can only be won through a commitment to honesty and transparency. There must be no surprises for people about how their private information is being used,” said Dr. byrne

The NDG team assembled a panel of advisors to help the FDP program get it right, she said.

“I have made it clear that NHS must give England sufficient time to listen to patients and professionals and then adapt plans to what it hears.

“I have pointed out that the program must be transparent and always strive to provide clear, easy-to-understand explanations from the platform of what data it will use, how it will use it, the benefits of the program and, just as important, The risks.”

One of the main criticisms of the GPDPR was that it did not inform and consult patients and only offered website information and social media posts.

“Openly addressing risks and how to mitigate them provides an opportunity to meaningfully engage the public and build trust in the system,” said Dr. byrne “This information should be publicly available, easy to find and accessible [FDP] The program then assured me that they will conduct research with the public to determine what information people want and need about the program. This will feed into its communication and engagement plans, which it has provided for me to review.”

The NDG has recommended clear governance frameworks and security measures for the platform. “I assume she will continue to engage with me on these matters,” she said.

Earlier this month, NHS Digital board papers revealed the UK government will be expanding its use of the Palantir platform, which it set up in response to the pandemic. The documents confirmed that patient identifiable data from NHS hospital systems will be shared with the existing data platform to reduce hospital wait times. This has led to warnings from privacy activists about further legal action.

According to documents seen by The registry, NHS England has now confirmed that this data extraction needs to be rolled out into functionality for the new FDP. NHS England said it expects to award the contract in 2023. ®