NHS Data: The upcoming changes explained

With so many data policies currently being implemented and announced, it’s becoming increasingly hard to know what’s what. MIP takes a look at all the latest changes around patient data that practices need to be prepared for and mindful of – including automatic patient access to records and GPDPR

Earlier this year, former health secretary Sajid Javid said in a policy document called Data Saves Lives that embracing the digital revolution was crucial for the NHS.

He said: ‘We cannot deliver the change that we need to see – and our 10-year plans for cancer, dementia and mental health – unless we embrace the digital revolution and the opportunities that data-driven technologies provide’.

In the document, Mr Javid said the Department of Health and Social Care (DHSC) would deliver this by focusing on a series of ‘concrete commitments’. These include using technology to free up staff time, giving patients better access to their data, and investing in secure data environments help research.  

There are several upcoming changes that hope to contribute to these commitments. We’ve taken a look at what they are and what practice managers need to know.

Patient access to records

What is it?

Patients are to be given access to their records online, through the NHS App and other approved patient facing service apps which offer record access, such as Evergreen, Airmid, SystmOnline and Patient Access.

This year, the change will only be to prospective records, including new entries, letters and free text elements. But the NHS has announced an intention to make historic records available from 2023.

Who does it apply to?

For now, this change will apply to practices who use TPP and EMIS systems. Arrangements for practices who use Vision are still ongoing, according to NHS Digital.

When is it happening?

While it was initially set to happen in December 2021, this was delayed to April 2022 after the BMA wrote to NHSX expressing concerns about its rollout. The date was then pushed back again to July 2022, and then again to November 2022 due to safeguarding concerns.

Prospective records were meant to be available to patients from 1 November, although NHS Digital encouraged practices to consider doing this gradually beforehand.

However, this week IT systems suppliers EMIS and TPP (SystmOne) said they would not switch on automatic patient access to their records via the NHS app on 1 November.

This came after ‘many’ GP practices asked suppliers to halt the rollout due to patient safety concerns.

NHS England and the current health secretary, Steve Barclay, have this week said automatic access will still go ahead this month.

But, practices are able to delay the change until 30 November if they instruct EMIS or TPP to pause automatic access by 5pm on 4 November.

Those who have not will have the change implemented ‘as planned’, with prospective data entered into patient records from 1 November being automatically visible in a ‘phased way’.

Historic records are expected to be available through the NHS App from next year, however details of this have not been announced.

What action do practices need to take?  

Practices have been asked to consult the ‘readiness checklist’ to ensure they are prepared for the changes, including ensuring harmful and confidential information is redacted as it is being entered into the systems.

This checklist includes:

• Identifying patients who could be at risk from having automatic access to their records and ensure safeguarding processes are in place.
• Potentially harmful, confidential third-party or sensitive data should be reviewed and, if necessary, redacted in the interests of the patient.

Practices will also need to remove access for individuals if necessary. They can exclude individual patients by adding the appropriate SNOMED (Systematised Nomenclature of Medicine) code to their record. The NHS has also said this code can be applied to groups of at-risk patients using reports.

GP practices should also be aware than when registering new patients, they will have to repeat the work already done by the previous practice of redacting their record.

What’s been said about it?

NHS England’s interim medical director for primary care, Dr Kiren Collinson, recently said in a blog that: ‘Without this access, patient understanding will continue to be heavily reliant on either their memory of previous interactions with staff or on contacting their GP practice for information.’

But as recently as last week, the BMA was calling for the change to be delayed again.

A BJGP study also found that giving patients access to their records online could unintentionally lead to extra work, poorer record keeping and misunderstanding among patients.

However, of the 16 early GP adopter sites who have already granted prospective online access to patients ahead of the national deadline, most sites said they did not see a noticeable increase in workload. Some practices believed it had decreased the volume of calls from patients requesting test results, and therefore reduced the administrative burden on staff.

Shared care records  

What is it?

Shared care records, previously called Local Health and Care Records, will enable the sharing of a patient’s health and care information across different parts of the NHS and social care system to promote ‘joined-up care’.

They are intended to be a ‘standardised and consolidated view’ of a person’s health and care.

The content of the records will be based on ‘professionally agreed standards’ developed by the Professional Records Standards Body. They will include a consolidated medication record to enable health and care professionals to see where there may be gaps in care such as with immunisation, as well as identify individuals at risk.  

In the Data Saves Lives paper, Sajid Javid committed to the shared care records programme making it possible for staff to see a person’s information in one record and for patients to make contributions to it.

Mr Javid extended the scope of the shared care record within his plan for digital health and social care in June 2022, which said that non-clinical social care professionals would also be able to view and contribute to the record.

When is it happening?

The first phase of this has already been completed in March 2022, with each ICS having a basic shared care record in place to enable information sharing between practices and trusts, according to the Data Saves Lives paper.

But, by December 2024, individuals, their approved caregivers and their care team will be able to view and contribute to the record.

By March 2025, non-clinical social care professionals will also be able to view and contribute to patients’ digital health records in England.

What action do practices need to take?

The responsibility for this shared care record programme lies with ICSs, according to a white paper published in February.

It said: ‘Every ICS will need to ensure that all constituent organisations have a base level of digital capabilities and are connected to a shared care record by 2024 enabling individuals, their approved caregivers and their care team to view and contribute to the record.’

For the changes coming in March 2025, the Government is responsible for ensuring that modern, integrated, secure and user-friendly digital systems are available to primary care through the GPIT Operating Model and Digital Care Services catalogue.

What’s been said about it?

The DHSC has said the plans will enable ‘safe and proactive decision-making and a seamless experience for people’.

Some have warned that giving patients access to add to their records could ‘bloat’ GP records and make them difficult to use.

In June, the former health secretary said: ‘Ensuring more personalisation and better join-up of the system will benefit patients, free up clinician time, and help us to bust the Covid backlogs.’

However, the DHSC report also mentioned that the proposed actions ‘still require business cases that require HM Treasury approval’.

GPDPR

What is it?

General Practice Data for Planning and Research. This is the collection of GP data from medical records to support health and care planning and research.

This is about developing a new, secure and efficient way to collect the data on what causes ill-health and how to prevent and treat it.  

When is it happening?

The change was initially meant to happen in June 2021 but was delayed until September the same year after fears the plan would mean sensitive patient would be made available to private firms and that there was a lack of public awareness of it.

In July, the date was again postponed with health minister at the time, Jo Churchill, saying that a start date would not be set.

In a post updated in August 2022, NHS Digital said: ‘We do not have a set start date for this collection and will only do so when we, and our partners, are confident that we have engaged, listened, learned and made changes as a result.’

They have said they will only begin to collect data when:

• The BMA, RCGP and National Data Guardian (NDA) are satisfied with the arrangements
• An effective and secure computing environment has been developed, known as a Trusted Research Environment (TRE)
• Any previous data collected through the programme can be deleted at any time
• People are more aware of the collection process

Also in August, NHS Digital announced it was recruiting members to a research programme to gather more information from the public about how they would like their data from their local GP used.

What action do practices need to take?

Currently, none. NHS Digital has said: ‘The General Practice Data for Planning and Research Direction, Data Provision Notice, Privacy Notice and Transparency Notice have been taken down subject to further review. No action is required by GP practices or GP system suppliers in response to them.

‘We will develop new versions of these documents which will be informed by the views we hear during the different phases of our work’.

Can patients choose not to have their data shared?

Yes. Yet, in August this year, it was revealed in an NHS Digital survey that a third of practice managers have a knowledge gap around the GPDPR programme, including on ways for patients to opt out, which is a key part of the programme.

Patients have two ways of opting out of their data being shared – they can do this at any time and there is no deadline for this. Patients can also opt in again if they have opted out in the past.

The first way of opting out, Type 1, is where patients choose to stop their GP surgery from sharing their data with other organisations, unless for direct care purposes. NHS Digital will still be able to collect and share data from other healthcare providers, such as hospitals. Only GP surgeries can process this opt-out form. Patient to fill in this form and hand it in to their practice.

A Type 2 opt out, or National Data Opt-out, is where patients opt out of all personal data sharing for research and planning purposes by NHS Digital and other health and care organisations.

What’s been said about it?

Back in 2021, privacy campaigners warned that the new automatic extractions of data would be ‘far bigger’ and ‘more intrusive’ than the data programme GPDPR is replacing.

Some doctors at the time threatened a legal challenge against the Government unless it reversed its plan, saying it would be the ‘largest seizure of GP data in NHS history’.

Ms Churchill wrote to GPs in July 2021 to outline the key areas of work which would ‘strengthen the plan’ in order to ‘foster trust in the system and provide a strong basis’ for practices and patients to ‘participate in the scheme with confidence’.

Eva Simmonds, programme head for GP data at NHS Digital, added in August: ‘We are committed to being open and transparent about access to data in GP systems and we are engaging with GPs, patients and the public to shape our approach.’

Practice appointment data

What is it?

The DHSC will be publishing appointment data for each practice in England in order to help patients ‘choose the right practice for them’.

This was announced in former health secretary, Dr Thérèse Coffey’s patient access plan called Our plan for patients, published in September.

It will include data on how many appointments each GP practice is offering, alongside appointment waiting times.

When is it happening?

An NHS England GP bulletin revealed this will take place on 24 November 2022.

What action do practices need to take?

None. NHS Digital intends to publish practice level data alongside their monthly appointments in general practice publication using data which is already collected regularly from GP system suppliers.

But practices are able to view their data ahead of the release, through the practice level dashboard here.

How will it be policed?

ICBs will be required to hold practices ‘to account’, according to the access plan, and support them to improve performance. The Government also expects ICBs to intervene where services need to be improved.

In an interview on LBC radio when the plan was published, Dr Coffey said the only repercussions for practices would be the potential for patients to switch GPs.

She said: ‘This is about clear expectations. [If] patients are seeking care, they may be able to switch to a different doctor. And then of course, that will reduce the funding that goes into that doctor.’

What’s been said about it?

The paper, Our plan for patients said: ‘Patients will have more information available to choose the right practice for them. From November 2022, we will publish easy-to-use data showing exactly how many appointments each practice in England is delivering and how long people wait between booking an appointment and receiving one.’

It added that while this would make ‘performance more transparent’, the Government ‘will not be prescriptive with high performing practitioners’.

The BMA however has said that none of the measures are ‘underpinned by any contractual agreements’ and that it was ‘nothing more than a lot of hot air’.