Few NHS IT projects are implemented ahead of schedule: especially when they involve sharing information across multiple providers using systems from multiple software suppliers.
Yet the Scottish Key Information Summary reached a milestone set for the end of 2014 in the summer of 2013.
Real improvements to real lives
The KIS is an electronic patient summary record created in primary care that, with the help of the patient, is shared across organisations in Scotland.
It is primarily aimed at people with long term or complex conditions, for whom sharing information about their condition, their care plan, and their wishes can help to make sure that they receive the right treatment in the right place at the right time.
Dr Libby Morris, eHealth clinical lead for NHS Lothian and a GP, explains two real situations in which the KIS has made a difference.
One involved a nursing home resident who was frequently admitted to hospital vomiting blood. She and her GP agreed that she did not want to go to hospital the next time this happened.
This was recorded in her KIS. So when the situation recurred one night, the out-of-hours doctor was able to take her wishes into account and treat her in the nursing home.
Another involved a child with a complex neurological condition who needed very specific positioning when ill to avoid compromising their airway.
Again, this was recorded in the KIS. An ambulance crew called out in an emergency was able to view these instructions on the way to the child, so they arrived fully prepared and informed.
Dr Morris says this gave the whole family great confidence; and also meant they didn’t need to explain the complex information multiple times.
On a more prosaic level, using the KIS has saved countless hours of faxing and retyping patient information, as well as providing faster access to information for clinicians.
Building on what works
The KIS is automatically updated when changes are made in the primary care system and is available on clinical portals in secondary care as well as on tablets and iPads in cars and ambulances. Even where it is not available electronically – for example in nursing homes – GPs are now printing out the KIS.
More than 40,000 people have created a KIS with their GP; during the pilot phase only one person refused to give consent for information to be shared and even this changed once the benefits were explained.
The notion of a shared summary care record was not new in Scotland when KIS was conceived in 2011. “We already had the emergency care summary,” says Dr Morris.
“We needed to build on that, specifically to create a summary of important clinical information about a person’s care and their situation – including where they would like to be cared for – available in any situation.”
The first task in developing the concept was to agree what would go into the KIS. This took a year, says Jonathan Cameron, head of project management for NHS National Services Scotland.
“It was developed through extensive consultation,” he explains, saying that for him this was the critical part of the project. It was a process that included not just clinicians and health boards but also patient groups and the Scottish Government.
The formal information governance was carried out early on in the development, engaging with the Information Commissioner’s Office directly. “Yes there were concerns, but the general principles of sharing information were accepted quite quickly,” says Cameron.
“It’s very much about patient consent and making sure the patient is fully informed,” adds Dr Morris. “People’s expectation now is that information should be shared for clinical care.”
From engagement to systems
Next came a technical part. How to make it viewable? With multiple systems in use across the various providers who need to access the KIS, the solution reached was to write the KIS in primary care, house the data in a central data repository, and – where possible – make it viewable in users’ native systems.
“We held very open supplier workshops to develop this,” says Cameron. “The advantage we had was that we went to them with a specification and that took the debate away. It came down to suppliers engaging with their users about how they wanted to view it.”
So far, the KIS is available to all users in out-of-hours, NHS24, hospital pharmacy, A&E departments, prisons and hospices, and the roll-out will extend its use further into new areas.
Having designed the KIS, and a system through which to use it, the crunch question was: did it work? A formal pilot scheme with 80 GP practices, evaluated by NHS Forth Valley, proved the value of sharing information and that GPs were willing to create the initial record and keep it up to date.
“The feedback from emergency care providers was that it helped them improve the quality of care and to make treatment decisions more quickly,” says Dr Morris. “Some GPs have told us that it reduces their workload, as it allows them to go through a fairly structured but quick process to record all the information.”
With this evaluation and positive feedback, as well as backing from key groups such as the BMA, KIS was rolled out nationally across Scotland’s health boards this summer – well ahead of the original deadline of the end of 2014.
It has also been built into national policy, feeding into major items on quality, safety, e-health, anticipatory care planning, health and social care integration, e-prescribing, mental health and nursing home care provision. It is a major item in the new GP Contract in Scotland.
Working with what works
As with all such projects, the KIS will remain a work in progress. An evaluation to understand its impact on hospital admission is likely to get underway soon. A mobile app to view the KIS is in development to give wider access, for example to community nurses.
So is the KIS replicable elsewhere? Northern Ireland is already planning to develop a similar summary record and will be using the Scottish KIS as a template, says Cameron.
As for lessons learned, he adds that getting the backing of a wide group of stakeholders and sorting the IG are top priorities. Beyond this, he says: “My general advice is that this is an approach that works; sharing information and involving patients is the right thing to do.”