UK’s NHS has delayed its plans to share patient data after objections from multiple levels. The scheme known as the General Practice Data for Planning and Research (GPDPR) was to go into effect on July 1. It has been pushed for 1 September. NHS plans on addressing concerns about patient safety till the scheme goes live.
NHS Digital has said that collating patient data in one place is important for medical research, thus positively affecting population health.
What is the new scheme all about
The original plan is to collect patient data including physical, sexual, mental health and collating it all on a central database. Patients were given till June 23 to opt out of their data collection. There has been no revision on the date. The NHS has said that the data will not include any mentions which will identify the patient. Details such as names, addresses and any images will be excluded. Patients’ postcodes will be included, but in a coded form.
This new system will replace the existing General Practice Extraction Service. It will collect data from the last ten years and will be constantly updated in real-time.
Why are they doing this?
For medical research. The NHS has maintained that the data will never be used for commercial purposes. The NHS Digital CEO, Simon Bolton, said: “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. We are absolutely determined to take people with us on this mission. We take our responsibility to safeguard the data we hold incredibly seriously.”
NHS Digital has also said the current system for collecting patient data is more than 10 years old and needs replacing.
Health Minister Jo Churchill has said that , “Data saves lives, it’s as simple as that. We’ve seen that in the pandemic; it’s one of the lessons of the vaccine rollout. The GP data programme will strengthen the system and save lives and patient data is of course owned by the patient. And we are absolutely determined to take people with us on this journey. We have therefore decided we will proceed with the important programme but we will take some extra time.”
The main criticism around the plan has been the lack of transparency. Privacy campaigners have been demanding more transparency and details around the plans.
The British Medical Association (BMA) called the scheme’s delay “an important win for patients, family doctors and the BMA”. The BMA has repeatedly called for the scheme to be delayed. The association’s has said earlier, “Everyone deserves to know what happens to their healthcare data, and throughout our discussions with NHS Digital about this programme, we have stressed the importance of clear communication with the public.People need to fully understand what this programme means and crucially, how to opt-out of their data being shared, if this is what they want to do.”
The NHS has addressed some of the common concerns. They have also said that patient data will only be released to private institutions over certain circumstances.
The NHS had tried to collate patients’ data in a centralised system under the ‘Care.data’ programme which started in 2013. It was stopped after multiple protests and concerns.