Omega, the National Association for End of Life Care, is an ambitious new charity, promoting excellence in care for people nearing the end of their life. It developed from, and is closely aligned with the work of the National Gold Standards Framework Centre, hosted by Walsall Teaching Primary Care Trust.
The organisation has an extensive remit in end-of-life care, and works with an expanding network of organisations both within the NHS and beyond. The formation of the charity, which became active in late 2008, comes at a crucial stage in the development of end-of-life care in the UK. The number of deaths in this country is predicted to soar by over 17% for the next 20 years. Deaths will outnumber births by around 2032.
In November 2008, Omega, working closely in partnership with the University of Birmingham and The Evidence Centre, was commissioned by NHS London on behalf of the Department of Health to deliver the first National Primary Care Audit in end-of-life care. A detailed report of the findings will be published later this year.
This ground-breaking project, based upon the ADA (after-death analysis) online tool, required the development of a flexible, user-friendly database system to record anonymous end-of-life case information from GPs.
The system combines a facility to instantly generate preliminary feedback reports, to encourage ongoing participation, with the ability to produce detailed bespoke reports and consolidate and compare data efficiently.
GPs are invited, on a purely voluntary basis, to complete a sophisticated online questionnaire about end-of-life cases they have been involved with. Information captured includes details about the cause of death, whether the death had been expected, any interaction between carers and community services, and whether the death had been preceded by one or more unplanned or crisis hospital admissions.
As such information often needs to be collated over a period of time, files need to remain open and are not submitted until complete.
“The multiple users of this system are GPs, other senior clinicians, practice managers and administrators,” Tom Memery, Omega’s development director explains. “These are busy professionals, entering complex data without obligation. It was imperative, therefore, that the system we implemented was as easy to use as possible. Users need to be able to log in and enter data at their convenience.”
Mr Memery asked a colleague to begin the search for a long-term delivery partner, with the proven ability to develop a solution quickly and cost-effectively, and with inherent flexibility for expansion or repurposing of the software for future projects.
“When we came across DCSL, we were impressed by the company’s Microsoft Certified Partner status, and the fact that they use Rapid Application Development programming facilities for developing database applications quickly and cost effectively,” he says.
The customer service we receive is very good and the relationship Omega has at every level with the DCSL team is second to none. The software does exactly what we needed. It is also very flexible, which has enabled us to re-use the functionality in other projects.
A database which allows GPs to submit details of patient deaths into a national register. This data is then collated automatically and presented back to the GP as a national benchmark.
DCSL, with which Omega has since developed a very positive relationship, was able to very rapidly develop a flexible, intuitive database solution, which is securely accessible via the Internet using a simple browser.
As well as being highly user-friendly, the system allows GPs to skip irrelevant sections of the questionnaire, saving them valuable time.
“The bespoke software does exactly what we needed. It is also very flexible, which has enabled us to re-use the functionality in other projects,” Mr Memery comments. “It has also been very cost-efficient, because of the sheer speed of development and the fact that in-built self-help functions have limited the number of helpdesk enquiries received by the Omega project team. Cost efficiency is essential given our charitable status.
While the statistics collected are not yet publicly available, the response rates from Health practices have been “much higher than expected”, according to Mr Memery. “This is due to tight project management, first-class customer service and the seamless functionality of the DCSL system,” he notes.
“The value of the Audit can’t be quantified, but this is a truly ground-breaking project, as it is the first audit of its kind. It provides a basis for benchmarking, and therefore monitoring and improving the state of national end-of-life care in this country,” he says. “This information can then be used for any subsequent similar audit and, crucially, will help practioners and commissioners make critical improvements to the services provided in end-of-life care.
“This is the start of something much bigger,” he adds. “The Audit fits firmly within the Government’s new End of Life Care Strategy.”
Omega has already commissioned further development work. “DCSL has now completed a second application of the ADA tool, which will be used in care homes,” Mr Memery says. “Here, users are sometimes less familiar with gathering statistics than GPs and, again, are very busy, hard-working people so ease of use is even more important.”
A third variant of the database solution has been commissioned for delivery in October. This will be “bigger and better”, informed by feedback captured during the course of the end-of-life audit, with detailed evaluation planned for this summer.
“We’re looking for continuous improvement” Mr Memery explains. “Our aim is to create a broader database which also doubles as a learning tool, so that we can identify improvement opportunities in existing end-of-life practices, enabling us to direct users to sources of help. This, in turn, means we need a very flexible bespoke software solution, to which we can keep adding value.”
“This project is all about making a user-friendly connection with people, and working effectively as a small team, letting technology take the strain. That’s what we’ve got with the DCSL system.”