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End of life standard 'needs work' - GPs

20 March 2012   Rebecca Todd

A new information standard related to recording keeping for end of life care is “not fit for purpose”, a GP IT representative has warned.

The End of Life Care Co-Ordination: Core Content Information Standard has been published today by the Information Standards Board for Health and Social Care.

It sets out and describes a core dataset to “make the best use of electronic systems to deliver high quality, well co-ordinated care”, along with associated guidance on record keeping related to end of life care services.

This dataset, developed by the National End of Life Care Programme and the Department of Health, includes information about a patient’s end of life care, their wishes and preferences about where they wish to die, and contact details for relatives and carers.

Joint chairman of the BMA and RCGP's joint IT committee Dr Paul Cundy said the committee was asked to endorse the new standard, but refused.

“We didn’t feel it was at a level that could be endorsed as a national standard by the GP IT community,” said Dr Cundy.

He told eHealth Insider the committee had concerns about the lack of support for the standard, and about some of its details.

The standard comes with no implementation plan. There is no money to implement the standard and no way to enforce its use.

“The way the standards board has worked in the past is - you can’t have national standard status unless there’s an implementation plan,” Dr Cundy explained.

The standard does not contain any medication information, which Dr Cundy described as “a slightly large hole”, as “that is one of the key things a ‘jobbing GP’ wants to know about.”

And he said that while there is a Read Code for “do not resuscitate” and for “resuscitate”, there is nothing for “status is not known”.

Dr Cundy said it had been suggested that this could be written in free text, but argued that if the information was transferred from one system to another, all the free text could be lost.

“We made those comments and agreed to work with them [the ISB] to bring it up to fit for purpose status. I’m sure we can get there.”

Dr Cundy added that having a standard for an electronic database would not help a GP visiting a patient at 3am, because they would not be able to access it.

“We felt it was far more sensible to put effort into developing a national standard paper file folio that can be kept by a patient’s bedside,” he said.

He argued this would also make the information more useful to carers and nurses, as they were unlikely to have mobile internet access, and would therefore be updating the electronic record at the end of the day – if they did it at all.

A spokesperson for the National End of Life Care Programme said: "The ISB approves information standards and includes representatives of all major organisations involved in health and social care.

"The draft standard received overwhelming support during a professional and public consultation in the autumn.

"The ISB decided that the standard could now be approved while we and they continue to work on outstanding issues, in particular those raised by the joint committee."

The programme said implementation of the standard would primarily be through Electronic Palliative Care Co-ordination Systems, although it should also be useful for paper-based co-ordination systems.

The palliative care systems - formerly known as locality registers - are IT-based approaches that give staff across a range of organisations instant access to up-to-date information on anpatient’s care and preferences.

New contracts with IT providers to establish an EPaCCS must include the requirement to comply with the newly issued standard.

IT suppliers of existing systems which are used for end of life care patients will be required to ensure compliance by December 2013.

Dr Bee Wee, president of the Association for Palliative Medicine, said recording and sharing key information about a person’s treatment and their preferences was essential to support timely and high quality end of life care.

“This standard will improve accuracy, avoid misinterpretation and misunderstanding and reduce the duplication of questioning that individuals sometimes encounter,” she said.

The new standard sets out the technical criteria and processes that contracts need to cover. The implementation guidance supports those planning to implement EPaCCS and sets out procurement and technical advice, including potential technical approaches.

Both documents are available on the NHS End of Life Care Programme website.


Related Articles:

News: UK does well on end of life care | 16 July 2010
News: NIGB urges CCGs to focus on data control | 24 November 2011
Last updated: 20 March 2012 09:43

© 2012 EHealth Media.


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ISB response

RTodd 108 weeks ago

EHI spoke to director of the information standards management service, Mark Reynolds, today who said medication information was not in the core data set, but could be optionally applied.

He explained that the standard was not designed to limit what information could be collected and local decisions could be made about how to proceed with it.

%u21CGPs can determine how they want it to work, if the decision is made that medication should be included, the ISB would be supportive,%u21D Reynolds said.

The coding regarding wishes for resuscitation was a technical issue on which advice had been sought and the arrangement would be reviewed in a year.

Reynolds said there was information about implementation in the standard%u219s specification which could be found online.

%u21CI understand that concerns were raised, as with all standards, it%u219s balancing between different stakeholders,%u21D he said.

Reynolds added that the standard had the support of professional bodies such as the RCGP.

He said monitoring of adherence would be not be done by the ISB and the DH would undertake a review of it in a year.

Monitoring of adherence by suppliers should be %u21Clocally led%u21D.


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End of Life Care

starslikedust 108 weeks ago

The end of life care core content standard is part of a much wider programme of work improving end of life care information. In line with the future direction of health informatics, the minimum data is mandated by the centre, leaving local commissioners, providers and their IT suppliers to determine the best way of delivering the solution.

The standard includes an implementation plan in the specification. It also includes medication, but as an optional component. This is a tricky area. Medicines are not consistently represented electronically across health and care. Rolling out the dictionary of medicines and devices (dm d) outside primary care would achieve this.


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