The future of patient data is on hold…for now.

by | Jun 29, 2021 | Articles, News | 0 comments

I’m relieved to see that Government plans to force GPs in England to hand over all patient data to NHS Digital this month have been pushed back till the autumn.

Under the General Practice Data for Planning and Research (GPDPR) initiative, ten years’ worth of historic data from GP surgeries in England will be uploaded to a central database, with new information added as it comes in.

The aim is to use the data to improve planning and research services.

Good planning is certainly going to be needed, if NHS leaders are to find a way to tackle the huge backlog of routine treatment and care caused by the pandemic.

And there’s no better dataset to use.

The NHS has the best health data in the world, due to our comprehensive national healthcare system.

Simon Bolton, chief executive of NHS Digital, stressed the positive impact of data sharing: “Data saves lives and has huge potential to rapidly improve care and outcomes, as the response to the Covid-19 pandemic has shown.

“The vaccine rollout could not have been delivered without effective use of data to ensure it reached the whole population.”

From developing lists of the most vulnerable patients so they could be protected by shielding, to managing the vaccine rollout, NHS data has been central to the country’s pandemic response.

Now the government wants to build on that success and use GP data much more widely for central planning and research.

But the process has been clumsy.

The initial time frame was just six weeks, giving very little time or scope for public involvement.

The draft strategy has now been published for consultation, but the deadline for public engagement is only 22nd July, and when last I checked, the link to the public survey mentioned was nowhere to be found.

While I’m very much in favour of using patient data for the public good, with the right consents and information security in place, I can’t help feeling that by using opt-out rather than opt-in consent, this project has the potential to seriously undermine patient trust.

The other thing that’s not clear is who exactly might have access to your data.

It’s been suggested that aggregated information will be made available to organisations deemed appropriate by NHS Digital, including private commercial companies.

The information will include everything in your records, including sensitive topics discussed with your GP in confidence.

And it could be linked back to you.

Thanks to the British Medical Association and the Royal College of GPs writing to NHS Digital to express their concerns about the GPDPR programme, there’s now a pause to allow more time for the public to get informed about the plans.

I welcome this, but there’s no sign so far of a public information campaign.

I’m alive today because people who had non-Hodgkin lymphoma before me generously gave permission for their health data to be shared for research.

Without proper safeguards for our data, I’m not sure people will continue to feel the same in future.