The pros and cons of centralised digital patient records
> We've got to have fully digital patient records
There are both benefits and risks/negatives with centrally stored electronic patient records. Once such personal data is shared then it is basically impossible to ever "unshare" it in the future.
One of the main risks with centralised records is that they are available to an ever-increasing number of organisations (and departments/people within each of those orgs) that may or may not have a valid reason to access such records.
Here's a relevant example from Meeting Minutes showing Hospital Trusts apparently ignoring the ICO's strong advice regarding whether Trust Occupational Health staff should have access to the Northern Ireland Electronic Care Record (NIECR):
9th December 2022 Minutes:
"The Steering Group also noted that this matter had been discussed as part of a meeting with the Information Commissioners Office.
Members noted that previously the ICO had been strongly of the view that OH access to NIECR caused them some serious concerns....
The Steering Group agreed that given the clear advice from the ICO that Occupational Health access should cease, and the NIECR Team should examine the best way to engage with the Trusts to action this."
10th February 2023 Minutes:
"The Steering Group noted that a letter confirming that Occupational Health access would cease on 31st March was being drafted..."
31st March 2023 Minutes:
"After discussion, during which both sides of the argument were clearly expressed, it was agreed to extend the Occupational Health access to the NIECR as requested, during which time the NIECR Steering Group would seek guidance on the legal advice being provided to the Regional Occupation Health Group and any correspondence they have had with the ICO."
12th May 2023 Minutes:
"The Steering Group noted that system access for Occupational Health staff had been extended until the 30th of June.
During discussion [redacted] noted that if the matter could not be resolved between the Steering Group and the relevant Trusts it may be necessary to seek an opinion from the Information Commissioners Office."
23rd June 2023 Minutes:
"[redacted] informed the meeting that he had informed the relevant parties of the impending end to the extension of Occupational Health professionals to access the NIECR. 30th of June. This had in turn promoted a significant amount of correspondence by email which had included a request for a further 3-month extension.
...
[redacted] also expressed her concern to the requested extension. She argued that the legal advice which had been received by the Occupational Health clinicians seemed at first reading to support the idea that Occupational Health access would not be lawful.
...
After further discussion it was proposed that Occupational Health clinicians within Belfast Trust should have access to NIECR extended to 31 August. They were to be notified that there would be no further extensions, and the Steering Group would require very clear advice that further access had a clear legal basis before continued access to NIECR was allowed."
18th August 2023 Minutes:
"After brief discussion it was greed[sic] that the Steering Group should reaffirm its decision that a recommendation be made to the Trust SIROs that Occupational Health Doctors' access to NIECR should cease on 31 August."
28th September 2023 Minutes:
"The meeting was reminded that Occupational Health Doctors' access to NIECR had ceased with effect from 31 August. However, a request had been received for a single Belfast Trust Occupational Health Doctor to have their account access extended until the end of September. This had been agreed by the Belfast Trust SIRO. This access was due to expire on 30 September and at the time of the meeting there had been no further communication."
20th October 2023 Minutes:
"[redacted] reminded Members that the Belfast SIRO had approved further extension for 1 Occupational Health account for a further 30 days until 30th Oct 23.
Subsequently the NIECR Team had received a request from SE Trust for the reactivation/creation of several Occupational Health NIECR Accounts. This was for both Doctors and Nurses. The Trust had been notified that this would need the explicit agreement of the Trust SIRO.
The meeting noted that the Trust SIRO had confirmed this request....
The Steering Group was informed that discussions were ongoing about the precise start and finish dates for this temporary access."
8th December 2023 Minutes:
"[redacted] informed the Steering Group that a further Occupational Health extension for access to NIECR had been agreed to Jan 2024."
26th January 2024 Minutes:
"[redacted] said BHSCT have extended access until end of February 2024. WHSCT have extended access expiry date to be confirmed. NHSCT and SHSCT have extended access until April 2024"