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The NHS is sometimes described a one of the last paper-based industries. Yet there are obvious disadvantages to operating on paper or electronic versions of it, such as fax.
Paper-based records can only be seen and maintained by one person at a time; so patients spend a lot of time giving out the same details to different professionals.
Even then, doctors, nurses and social care staff may not have complete or up to date information. Letters and faxes take time to send and receive. Patients and users can only get access to their own information with considerable effort.
These problems show up particularly in out-of-hours services; studies have shown that A&E staff can spend hours calling surgeries or standing by faxes, just to find out what drugs a patient is taking.
They also show up when patients need to move around the system; GPs often complain that they only find out that one of their patients has been in hospital when they turn-up in surgery. Another patient may be stuck on a ward waiting for a social care assessment.
These issues have led some areas of the country to invest in information sharing and shared care record projects. A good example is Bristol, which has been working on a project called Connecting Care since 2011.
Programme manager Jocelyn Palmer explains that the project has been through two phases.The first was a pilot to share GP-held data – such as basic patient details, allergies and medications - with out-of-hours and A&E services.
The pilot, which went live in 2013, fed information from local GP IT systems into a portal.
From there, urgent care staff could see it, as long as their job role gave them permission and patients gave their consent.
The second phase, which started in 2015, scaled the system.
The pilot covered 500 practitioners, most of them working in Bristol's three acute hospitals. Phase two already covers 2,000; with mental health, community services and social care on board.
"We wanted to develop a true shared care record; something that was richer [than the pilot] and that could support care in different ways," Palmer says. "For example, we have been working with three local authorities to include some information from children's digital systems to improve safeguarding."
"The idea is that if you are working in an emergency department you will be able to see some information about a child you are treating; for example that they have been taken to a lot of different A&E departments."
Phase two has also brought in new types of content, such as electronic documents and discharge summaries.
The documents that tell a GP what has happened to a patient in hospital. It will also support some technical changes, such as closer integration with hospital systems.
"We want to enable [hospital staff] to access the record with the click of a button from within the record [they use day to day]," says Palmer. "It should make a big difference, because people to not want to have to log-in to lots of different systems while they are doing their jobs."
Although it is still unusual, Bristol is not alone when it comes to information sharing. Liverpool, Cumbria and parts of London have major projects, built-out from technology that enables access to information in GP systems.
Lincolnshire is another county with a portal, while other areas of the country are looking at the health information exchanges offered by some hospital systems' providers.
Hampshire, Berkshire and parts of Manchester have gone down a different route, creating a new record that different services can access. A less common approach, but one developed in Bradford, is to get all local services onto one electronic record.
At a national level, information sharing was given a boost by the 'Personalised Health and Care 2020' IT framework that was launched in November 2014 to support the bigger financial and reform ideas of the 'Five Year Forward View' for the NHS.
This called for the creation of an 'integrated digital care record' and led to funding for three IDCR exemplars: Bristol, Bradford and Cumbria. Since then, NHS England's focus has shifted back to hospitals, thanks to Professor Robert Wachter's review of acute-sector IT.
But information sharing is still important at a local level. The 44 sustainability and transformation plans that have been drawn up to implement the Forward View all focus on the need to create and build on shared care record projects.
Hampshire is a case in point. It has been working on a shared care record since 2004, when it launched the Hampshire Health Record.
Like Bristol's pilot phase, this was initially focused on providing some basic patient information to staff working in out-of-hours and A&E services and has steadily expanded.
A case study from the South West Commissioning Support Unit says the HHR now provides both health and social care staff with: "care encounters, GP diagnoses, blood and radiology results, current medication, allergies, clinic letters, discharge information, and a growing pool of social care information".
Hampshire's STP puts great emphasis on the record as the foundation for better data and analytics for service planning, for IT that will "enable caring professionals to work from any location" with "real time information to support clinical decision making", and for new patient services.
Dr Mark Kelsey, a Southampton GP who is also the chief clinical information officer for the project, says all three strands will require significant amounts of work [see case study]. But he's also clear that these should generate further efficiencies.
"If you have nothing [in IT terms], then you need to do something, and something like a share care record is a good thing to start with," Dr Kelsey says. "But then you need to plug other layers into it."
One area that has already done this is Cumbria, which has
developed a shared care record and, uniquely, a system that is known locally as ‘air traffic control.’
This system, which local GP and chief clinical information officer Dr William Lumb calls a ‘logistics solution’ is designed to make sure that when patients are referred from one service to another the right information goes with them and it’s much easier to track their progress along a patient ‘pathway’.
At the moment, Cumbria’s hospitals are using the system, but there are plans to extend it to GP and community referrals. The local council is already on board, and will require any referrals to residential care to be made via the system from April.
Charities and other ‘third sector’ providers have developed an electronic market place that will plug into the system in due course. And there are plans for a patient portal that will enable patients to refer themselves for counselling, physiotherapy and similar.
“The traditional referral process, through Choose and Book, handles about 80,000 referrals to hospital per year,” says Dr Lumb. “But we think we will get to 300,000 referrals through Strata, and we are scaled for that.”
Crucially, Dr Lumb adds, the system will enable local commissioners and clinicians to lay out exactly what should be happening to patients on those pathways; and check whether that is happening.
“We can put key performance indicators on those 300,000 referrals,” he explains. “So, if a patient needs social care, you can put a KPI on when that should happen and if it does not happen within, say, the agreed 48 hours you can flag that on a dashboard – and a team can get onto it.”
Like Bristol and Hampshire, Cumbria has been working on its shared care record for years. It has had to get all its GPs onto one IT system, and to shift out-of-hours and community services onto the same system.
It has had to implement technology to share information from GPs with other services, and then upgrade it to bring in electronic documents and improve the user interface.
Like other pioneers, Cumbria has found that a shared care record addresses some specific information issues in A&E, GP and community services. But Dr Lumb argues repeatedly that it won’t drive change across a whole healthcare economy.
“A shared care record is the right thing to do, but you will not get transformative change without being able to track patient pathways,” he says. That might sound daunting to the many areas of the country still stuck on paper and fax.
But Dr Lumb is sanguine. The technology for sharing information has moved on, he points out. Areas like his have worked out how to map pathways, talk to clinicians, and overcome privacy and consent concerns.
“This is going into the Morecambe Bay vanguard [one of 29 national projects to test Forward View models of care]. If it performs well, everybody is going to want to know about it,” he says. “Then it will take two or three years for them to do it; but the first step is to understand what can be done.”
Hampshire has one of the longest-running information sharing projects in the country. It launched the Hampshire Health Record in 2004, taking a rather different route to Bristol and Cumbria.
The project opted to take feeds from local GP systems for a completely new record, with its own database, that staff could access via a portal. Access was steadily extended to more services until 2013, when there was a major technical upgrade.
This enabled the system to be scaled up, to take in more feeds, and to enable users to launch the record from within their own IT systems.
Dr Mark Kelsey, a Southampton GP who is also the project’s chief clinical information officer, says: “We have single sign-on, so we can see patients in context. That means it feels less like a separate system.”
As CCIO, Dr Kelsey has seen evaluations of the record’s benefits. “It is used a lot in [the acute hospital] in Southampton, particularly by pharmacists and ED doctors, and there is some evidence that it reduces the number of tests and admissions that are made,” he says.
But as a GP, he also has personal experience of what it can do. “The real benefits are with things like discharge letters. We often see patients in surgery who have been to hospital and had their medication change.
“They are told to visit their GP to get things checked, they come into surgery, and we have no information about what has happened. I have lost count of the number of times that the HHR has saved me, because I’ve been able to log-in and see what has happened.”
Still, there are positives and negatives to being a pioneer. Hampshire has learned a lot about getting different organisations and suppliers to work together on information sharing, and about dealing with information governance.
(The record was launched with a leaflet campaign, most local surgeries have posters about it, and patients are asked for their consent to view the record, if they can give it).
Yet Dr Kelsey admits it might make some different technical choices if it was starting from scratch. For example, the history of the record means the information in it is organised around the organisations that provide it, rather than around the patient.
The record also holds a lot of coded data, but not the ‘free text’ notes that appear in the GP record. Both issues will be addressed by another technical upgrade.
But in the meantime, a debate has started about where and how to provide real-time information. As it stands, the record refreshes every 24 hours; fine for a GP who wants to review a patient’s admissions history, not so good for an out-of-hours doctor who needs to conduct a remote consultation.
Even so, Hampshire has not only decided to stick with its record, but to make it the foundation for the IT that it needs to ‘enable’ the financial savings set out in its sustainability and transformation plan.
“The future is pulling things together,” says Dr Kelsey. “There are still some gaps to fill, where organisations are not providing information to the HHR, and there’s some rationalisation to be done, particularly in analytics. There’s also work to be done on tasks and alerts, and we may need to put something on top of the HHR to achieve that.”
There are also plans to create a patient portal for the HHR; preferably one that will work with a log-in that also works with local hospital and GP systems and that supports new digital services.
“The idea is that people will log-in to see their record, and then go on to get some advice, watch a video, or perhaps book a remote consultation,” Dr Kelsey says. It’s a big ask, particularly given the pressures that the NHS is under.
But Dr Kelsey is clear that Hampshire is far from the end of its IT development. “If you have nothing [in IT terms] and you need to do something, then something like a shared care record is a really good place to start,” he says. “But then you need to plug other layers into it.”