Regional record sharing project the Great North Care Record (GNCR) has launched a new regional network to encourage greater information sharing across the North East and North Cumbria.

The ambitious aim is to become the best region in the country for carrying out clinical research supported by a ‘consent rich environment of record sharing’.

Make the North East the best place in the world to do research

Dr Joe McDonald director for Connected Health Cities, CCIO and consultant psychiatrist at Northumberland, Tyne and Wear NHS Foundation Trust, said: “The aim of GNCR is to make the North East and North Cumbria the best place in the world to get care and the best place in the world to do research.”

To achieve this aim will require “game-changing clinical engagement and game-changing citizen engagement”, said McDonald, who is newly appointed professor of health informatics at Newcastle University.

GNCR Network launch backed by five trust chief executives

He was speaking at the Tuesday launch event for the new GNCR Network at Newcastle racecourse, attended by 250 clinicians, senior managers including five trust chief executives, researchers and academics.

The Great North Care Record, part of the £20m Connected Care Cities initiative, builds on a long tradition of clinical informatics collaboration across the North East.

The project has so far concentrated on supporting the widespread adoption of the Medical Interoperability Gateway (MIG), an initiative initially driven over by Northumbria Healthcare NHS Foundation Trust and Northumberland Tyne and Wear Mental Health  Foundation Trust, and then subsequently scaled up across the region.  Northumbria Healthcare remains by far the biggest user of the MIG.

“Dr Mark Westwood, CCIO for North Tyneside CCG and primary care lead for GNCR, explained how the work by Northumbria and NTW, established the proof of concept over record sharing and information sharing agremeents and clinical engagement established, “which then became the blue-print for the vanguard work”. 

Evidence of the strength of collaboration and shared commitment to information sharing was provided by the five chief executives of NHS provider trusts who joined a panel session, and spoke passionately how MIG supported their GDE and Fast Follower plans.

MIG now used across North East and North Cumbria

The MIG is currently being used for 96% of patients living in the region, with over 16,000 accesses of records in September. It provides clinicians in A&E, ambulance services and other unplanned care settings with access to a view of patient’s GP record.

Dr Mark Dornan, SRO for Digital Care Programme and chair Newcastle and Gateshead CCG, explained the scaling the MIG work had been aided by local emergency care vanguard project with help from the CSU.

Dr Phil Stamp, A&E consultant and CCIO at Northumbria Healthcare NHS Foundation Trust, outlined the benefits the MIG provided in his organisation.

“Before MIG went live in January 2016 we often had to put together a vague, incomplete and inaccurate record of a patient presenting in A&E. With the MIG available through our Orion patient portal and a simple access consent we can click straight to the details we need from within the systems we use.”

Record sharing delivering benefits every day

“There are 100s of pages of MIG accessed every day in my ED,” he added. “Receptionists are not phoning and faxing practices. ED doctors have more accurate and timely information and patients are less stressed.”

He said MIG access was particularly useful to find out about patients’ allergies and current medications. “For the future I would like it to be structured and integrated into the patient record. That would save 15-20 minutes on every patient.”

Ambitions to go beyond MIG

Building on the collaboration that has enabled widespread adoption of MIG and IG agreements between organisations across the region, GNCR now plans to go much further.

GNCR is already pioneering obtaining explicit patient content for clinical research to create a ‘consent rich research environment’, to help make the North East a go-to destination for large scale clinical trials like the Salford Lung project.

‘Game changing clinical and citizen engagement’

The plan is to use open standards to develop a region-wide health information exchange (HIE) to move beyond the capabilities of MIG to facilitate much richer information sharing. The ultimate aim is to provide safer care more speedily, making sure patient records follow an individual as he or she moves around the system.

Secret of consent is to get consent

But for this to be possible, particularly to get patients’ permission to have researchers contact them to ask them if they’d like to take part in a clinical trial, requires explicit consent for their identifiable data to be used. Professor McDonald added: “The secret of consent is to get consent. We’ve been running 17 workshops with local Healthwatches for a citizen-produced consent model.”

He argued that both the approach and the language needed to change.

“We want to stop talking about consent as that language has become tainted by We’re going to try to get all 3.6 million of the citizens in the North East and North Cumbria to record privacy settings. We think we can do this as it’s exactly what just about every other organisation does.”

Power of precision medicine being proven in Newcastle

To illustrate the power of the dawning age of precision medicine, in which treatment is targeted based on the patient’s genome, Sir John Burn – professor of clinical genetics at Newcastle University and new chair of Newcastle University Hospitals NHS Foundation Trust – spoke of how use of patient’s individual genetic data enabled far more effective targeted prescribing of anti-coagulant warfarin, compared to alternative direct oral anticoagulants (DOACs).

“Our use of data shows that DOACs are inferior to warfarin for most people with good monitoring.” He added that precision medicine in this one area could save Newcastle millions a year and result in better patient outcomes.

He added: “I’m hoping we can use big data to drive warfarin across the country and save both money and improve patient care.” He said that simple, cost-effective DNA testing developed in Newcastle “can now be rolled-out across the region very quickly using GNCR and reduce stroke rates, improve cancer treatment and save money.”