The British Medical Association (BMA) has expressed several concerns on NHS England’s ‘Data Saves Lives’ patient record access that is part of the NHS Long Term Plan and ‘Data Saves Lives’ Data Strategy. Data Saves Lives requires practices to offer, effective 1 November, patients aged 16+ access to their health records at their GP. Practices were notified back in April of the access available to them starting with care as of 1 November. The information includes consultations, documents (sent and received), problem headings, lab results, immunizations, and free text entries made by GPs plus secondary care, community services, and mental health services that go into the GP record. Patient access is currently working for practices with TPP and EMIS systems, with Cegedim (previously Vision) in progress.

The concerns in the BMA letter to GP practices center around protecting and redacting information from patients. This may sound contrary to the intent of Data Saves Lives, but in certain circumstances, such as risky situations with harm to the patient (example, a coercive situation or domestic violence) or to another individual. Practices are obligated to identify patients who could be at risk of serious harm.

The workaround identified is to add a specific SNOMED code to the patient’s full record before 1 November.  Practices will then need to 1) monitor if the patient requests access and 2) can schedule reviews on a case-by-case basis at a future date to identify if access can be provided. If third parties are mentioned without permission, this is also inappropriate to view and that information has to be redacted. 

The BMA also considered the Law of Unintended Consequences in these areas:

• Specific consults can also be redacted, but there are clinical safety concerns that the current software apparently does not function well and hides too much.
• Redaction does not remain in place following a GP2GP transfer
• There has been no public campaign that warns patients that the NHS app now can become a portal to their detailed health records. Users have passwords saved in their smartphones, and their family members who know the patient’s phone PIN can have easy access to health records. 
• Some practices may not be ready for opening their patient records
• Workload will at least for a time increase

BMA letter to practices, HISTalk 28 Oct, GP practice letter from Dr Ursula Montgomery at NHS Digital

Take a look back at the convoluted history of Data Saves Lives going back to June 2021.

Forming a “centre of excellence” for Australian healthcare connectivity is the Australian Digital Health Agency (ADHA) and the Australian e-Health Research Centre under the Commonwealth Scientific and Industrial Research Organisation (CSIRO). Terminology and interoperability are central to connectivity and governance. A third agency, the National Clinical Terminology Service (NCTS), will provide terminology services and tools, including an online browser, a mapping and authoring platform, and CSIRO’s national syndication server Ontoserver. According to the release, “under the new partnership, ADHA will retain responsibility for governance and the strategic role of end-to-end management, SNOMED CT licensing and the relationship with SNOMED International, while CSIRO will deliver the services and functions required to manage the NCTS, as well as content authoring and tooling” over the next five years. Healthcare IT News

And over in New Zealand, Te Whatu Ora – Health New Zealand and Te Aka Whai Ora – Māori Health Authority have developed the 2022 interim national health plan. Te Pae Tata New Zealand Health Plan identifies greater use of digital services as part of their six critical areas. Actions to be taken in the NZ$600 million (US$400 million) data and digital budget include:

• Create and implement actions to deliver national consistency in data and digital capability and solutions across Te Whatu Ora including streamlining duplicate legacy systems
• Implement Hira, a user-friendly, integrated national electronic health record, to the agreed level
• Scale and adapt population health digital services developed to support the COVID-19 response to serve other key population health priorities
• Improve the interoperability of data and digital systems across the hospital network, and between primary, community and secondary care settings
• Improve digital access to primary care as an option to improve access and choice, including virtual after-hours and telehealth, with a focus on rural areas

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