Article Text

Download PDFPDF

Evidence-based policy in palliative care: time to learn from our mistakes
  1. Katherine E Sleeman and
  2. Irene J Higginson
  1. NIHR Clinician Scientist in Palliative Medicine, King's College London, Cicely Saunders Institute, London, UK
  1. Correspondence to Dr Katherine E Sleeman, NIHR Clinician Scientist in Palliative Medicine, King's College London, Cicely Saunders Institute, London SE5 9PJ, UK; katherine.sleeman{at}kcl.ac.uk

Statistics from Altmetric.com

The article by Petrova et al1 is timely and thought-provoking. EPaCCS (Electronic Palliative Care Coordination Systems) have good face value: they appear so obviously a good idea. But scratch beneath the surface, as Petrova et al have done, and important challenges in public perceptions, funding, information governance, context and healthcare IT become apparent.

EPaCCS are electronic information systems that aim to improve coordination and communication through the recording and sharing of important information about patients' clinical condition and treatment decisions. All interventions may have benefits and harms, some of which are predictable, others less so.2 As noted by Petrova et al, there is currently very little published evidence on the benefits, or the harms, of EPaCCS. This evidence is needed to tell us what the key components of any EPaCCS system are, and the contextual factors important for their successful implementation. It should include comparative data to determine effectiveness according to patient-centred outcomes, as well as qualitative data to provide information on how the intervention is working, which should be sought from patients, carers and healthcare professionals.

It is essential that we gather this evidence now, before EPaCCS are rolled out more widely. If we miss this opportunity, we may find ourselves in a familiar Catch 22 situation whereby it is then impossible to test the effectiveness in a comparative trial.3 In addition, without a better understanding of the effects and key components of EPaCCS in the different contexts in which they operate, roll out could miss key ingredients, without which patients and families are not maximally benefited. In the light of the government's recent commitment to roll out EPaCCS to the majority of the UK by 2018,4 acquisition of this evidence must be a funding priority.

There is no doubt that EPaCCS have the potential to improve care for the dying. Research is urgently needed to determine whether or not this is the case, and what needs to be in place to maximise benefit and avoid harm, before wider roll out makes acquisition of the necessary evidence impossible. It is inconceivable that a novel chemotherapy would gain regulatory approval just because Phase I studies looked promising. We have an opportunity now to gather the evidence we need to determine the benefits and potential harms of EPaCCS. We must not waste it.

References

View Abstract

Footnotes

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; internally peer reviewed.

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.