EHI Awards 2010: The MDSAS touch

MDSAS won the ‘excellence in major healthcare IT development’ category of last year’s awards for its UK NHS Haemophilia Informatics Strategy.

Over the past few decades, people with haemophilia and related bleeding disorders have seen significant improvements in the treatments used to manage their condition.

As a result, they enjoy both increased life expectancy and a better quality of life. Adults are also better able to manage their condition from home, reducing the need for frequent travel to hospitals or other care centres.

For the NHS, this success has thrown up new demands. With the annual spend on haemophilia products now calculated at £180m a year, and with more patients taking direct delivery of those products at home, medication needs to be tracked.

Specialists also need to be able to monitor patients who present themselves less often to a haemophilia centre, and to have access to information about people affected by blood-related infections, including hepatitis, new variant CJD, and HIV.

Strategic thinking

Work on a national system for managing haemophilia started in 1998, when Dr Rob Hollingsworth, now head of software development company Medical Data Solutions and Services, took it on as part of his doctoral research.

The project turned into a nationally implemented informatics strategy for the management of a national NHS Haemophilia Service, based around four, integrated IT systems, all based on standard off the shelf technologies.

These are Haemtrack, a national, web-based patient home treatment record; trust-based Haemophilia Centre Information Systems; NHD, a web-based national haemophilia registry; and UKHIS, a national web-based reporting portal.

"There was nothing really specific on the market for haemophilia care," says Dr Hollingsworth. "Systems from commercial vendors would have needed customisation to allow for care outside hospital and for home delivery of medicines, which is a more recent development in the field."

Getting into the home

Most of the care for people with haemophilia takes place at specialist haemophilia centres, rather than at GP practices or in hospitals. One consequence of more home delivery of medicines is that patients visit these centres less often.

However, clinicians still need to be able to monitor their patients' status. If a patient experiences an increased number of bleeds, that might indicate that their condition has deteriorated or that they might need to switch to a different blood product.

So it was important that HCIS, which are hosted locally, could connect to the web-based Haemtrack platform.

"In some ways, home delivery has broken the bond between the patients and the centres, as patients now only need to go in for a review,” explains Dr Hollingsworth.

“The clinician does not always know what is happening to the patient at home, but he or she needs to optimise treatment. Information about bleeds or about a reaction to a product goes into Haemtrack when the patients treat themselves."

At the same time, haemophilia patients need to be directly involved in managing their own care, and Haemtrack is helping with that.

"Patient feedback has been really positive," says Dr Hollingsworth. "There are other systems, developed mostly by the pharmaceutical companies, but they have received pretty poor feedback.

“It is good to see a system in place that patients are happy to use, and that they see the benefits of using. That shows that the system is responsive, and works well."

Better data, better care

The NHS, for its part, is benefiting from improved monitoring of that £180m spend, and the use of haemophilia products.

Nationally, haemophilia services are also benefiting from improved access to treatment data, and this is being put to good use in research.

Data is being used to track how well the treatment systems are working, the effectiveness of treatment products, and to develop a better understanding of haemophilia itself. Real-time event monitoring, for example, is helping the NHS to detect new cases of nvCJD among people with haemophilia.

Haemtrack has also helped clinicians to identify the type of patient events they need to monitor and pick out urgently, which is further improving care.

In the next few years, NHS haemophilia care is set to be reorganised, with a regionalised network of care centres.

This will allow patients to receive treatments from any centre, rather than just from the centre they are registered with. This means that any haemophilia centre could need to have access to any patient's details.

For patients, meanwhile, Dr Hollingsworth's team is looking at iPhone and other mobile versions of Haemtrack.

National hosting

This development should be relatively simple for Haemtrack to accommodate, as it is already hosted centrally by the NHS, and runs on off the shelf technology, mostly from Microsoft, including SQL Server, ASP.Net and Ajax.

The centre systems, though, run on local hardware. The decision to host HCIS locally was made primarily to guarantee speed of response, and also to make sure the systems complied with local security, privacy and other IT procedures.

However, one of the most time-consuming aspects of the HCIS deployment has been integrating these systems with other local NHS IT resources. A more centralised model would reduce this integration work, and also cut down on maintenance.

"HCIS lends itself to a centralised approach, although there are issues around storage [of patient data] outside hospitals," Dr Hollingsworth says.

Tests have suggested that network speed should not be a barrier to hosting the centres' systems centrally. So the team is working with other parts of the NHS to resolve issues such as the need to integrate the haemophilia systems with other trust systems, including electronic patient records.

Solving this will mean clinical, IT and data managers working together. But Dr Hollingsworth argues the benefits for patients will make any pain worth it.

"The clinicians' feedback has been really good, especially among younger consultants who are more technology-literate," Dr Hollingsworth says.

Entries for the EHI Awards 2011 in association with BT are about to close. The final closing date for submissions has just been put back a week, to Friday, 10 June 2011.

However, there will be no further extensions, because of the tight timetable for judging. Enter now for a chance to be at this year’s black tie dinner in London in October.

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