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25.09.15

New palliative care data sets to provide nationwide picture of end-of-life care

Adult specialist palliative and end-of-life care services will benefit from a new data collection system devised by Public Health England (PHE) and NHS England, which will implement individual-level data collection nationally to provide a bigger picture of the quality of services nationwide.

The data collection, announced today (25 September) in a joint statement to providers, commissioners and patients, is due to start in July 2016 for both NHS and non-NHS hospital, hospice and community specialist palliative care services. It should be fully implemented nationally by April 2017.

Its purpose is to improve outcomes for patients and carers and support the development of a new palliative care funding model by NHS England.

Dr Martin McShane, national medical director for long-term conditions at NHS England, said: “The importance of palliative care in providing physical, psychological, social and spiritual support is greatly enhanced by making the information about a person available wherever they are, with their permission.

“In a digital world, continuity of information needs to be confidential but easy to access by the right people, reliable and accurate. This is why, with the information centre, we are providing the tools and wherewithal for this to happen.”

In a joint statement from NHS England and PHE, they recognised that palliative care sector data collection needs to be more robust and comprehensive. There is currently no mechanism to bring individual-level data together across sectors to provide a full picture of the service’s quality, leading to “significant gaps” in the understanding of its provision and no evidence of what is ‘good’ end-of-life care.

The two bodies are working together to explore the feasibility, options and costs of collection individual palliative data nationally to help providers achieve better outcomes.

Their vision for a single data set hopes to minimise the burden of data collection by identifying the key data that will make the most difference, and incorporating data held in routine clinical and care records where possible.

The single set will include demographic details, activity information and patient outcomes.

The statement said: “It will have the potential to make a real different to end of life care, providing clear information on the amount of palliative care activity, filling the gaps in available data and making it possible to link with other national data sets to get a more complete picture of care and to measure the impact of care delivery.”

As well as improve care delivery and better inform patient choice, the new data set model hopes to enable providers to streamline team working and implement local, regional and national audit and quality improvement initiatives.

And along with providing a more complete picture of palliative and end of life are provision nationally, it will facilitate commissioning of services, support new funding models, enable comparisons across services and inform future research.

Consultation on the data set has already begun as PHE works closely with NHS England, the Health and Social Care Information Centre (HSCIC), the National Council for Palliative Care (NCPC), Help the Hospices and the Cicely Saunders Institute.

To avoid duplication, the dataset will be fully aligned with the data collection requirement of the new palliative care funding system.

The statement added: “Developing currencies will be introduced in 2015 as a first step in the process of introducing a future palliative care funding system.”

Although there are no immediate implications for service providers, changes to electronic data clinical collection and submission from all specialist palliative care provider services in England will be rolled out from April 2017. Providers therefore need to consider the timescales for implementation, with services that already have electronic systems in place reviewing these systems to determine whether they can collection and submit patient-level data. Services that do not have the required IT capacity should develop plans for implementation.

Clinicians should also begin considering the impact this will have on the way they record information. The proposed data set will standardise the clinical outcomes information required for national collection, which may require a change to how clinicians currently work.

So far, the two bodies have consulted on, developed and are now testing a data set to collect demographic information about patients, service activity data and outcomes.

They have appointed 11 pilot sites to test the data collection, including hospices and specialist palliative care services in acute and community stings.

The first data should be submitted in September 2015, with an evaluation of the pilot to be published in 2016.

Professor John Newton, chief knowledge officer at PHE, said: “The NEoLCIN [National End of Life Care Intelligence Network] What We Know Now 2014 report revealed that there is a growing understanding within the health sector of what is important to people at the end of life, with more people dying at home or in care homes, the overall preferred place of death.

“With the NHS, we will continue to drive improvements in palliative and end of life care to ensure that peoples’ preferences are understood and action is taken to achieve them.”

Last week, NHE revealed the appropriate and equal palliative care provision was failing in both Scotland and Wales. More than 10,000 Scottish people die each year without appropriate palliative care towards the end of their life.

Part of this was due to there currently being little evidence of nationally-adopted palliative care as well as a serious information deficit on data available relating to its provision.

Comments

Rupert Fawdry, FRCS, FRCOG   28/09/2015 at 22:04

Q1. Is this primarily yet another “Secondary Data” collection initiative, concerned with retrospective data collection for audit, management and research? or does it involve the far more complex needs for “Primary Data” i.e. information needed by front line clinicians to help them in the care of the individual patients under their care. Q2. If the later it is likely to consist of a mixture of rigid data items and other areas which allow free text and it is essential that the flow pattern and wording of the questions and all allowable answer options are made openly available in a format easily understood by clinicians for an open internet discussion? If not why not? Q3. Has full note been taken of the unreliability of internet access outside hot zones. In the real world it seems likely that internet access at the home of all those requiring palliative care will not be sufficient for on-line record keeping for many more years than most like to believe. Q4. How does this initiative relate to the excellent work of the Royal Marsden in their Co-ordinate My Care initiative? Q5. And are there other similar initiatives in other English speaking countries? Q6. Above all has note been taken of the major problems with electronic records, especially regarding the increased data entry workload, at the expence of individual patient care, a problem being increasingly recognised in many places and highlighted in the USA article “The tragedy of Electronic Patient Records” accessible via www.tinyurl.com/eprtragedy My suspicion, which I hope can be allayed, is that yet again, data collection seems likely to take precedence over clinical care especially in the light of the comment that “Clinicians should also begin considering the impact this will have on the way they record information. The proposed data set will standardise the clinical outcomes information required for national collection, which may require a change to how clinicians currently work.”

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