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Br J Gen Pract. 2019 Dec 26;70(690):e20-e28. doi: 10.3399/bjgp19X707117. Print 2020 Jan.

Electronic care coordination systems for people with advanced progressive illness: a mixed-methods evaluation in Scottish primary care.

Author information

1
Marie Curie Hospice, Edinburgh; honorary fellow, Usher Institute, University of Edinburgh, Edinburgh.
2
St Columba's Hospice, Edinburgh; specialty doctor, Marie Curie Hospice, Edinburgh.
3
NHS Lothian, Edinburgh; research assistant, University of Edinburgh, Edinburgh.
4
Marie Curie Hospice, Glasgow.
5
NHS Tayside, Dundee; national clinical lead for palliative care, Healthcare Improvement Scotland, Edinburgh.
6
West End Medical Practice, Edinburgh.
7
Marie Curie Hospice, Edinburgh.
8
Marie Curie Scotland, Edinburgh.
9
eHealth Division, Directorate for Health Finance, Corporate Governance and Value, Scottish Government, Edinburgh; GP Partner, East Linton Surgery, East Linton, East Lothian, Edinburgh.
10
Usher Institute, University of Edinburgh, Edinburgh.
11
University of Edinburgh, Edinburgh.

Abstract

BACKGROUND:

Electronic care coordination systems, known as the Key Information Summary (KIS) in Scotland, enable the creation of shared electronic records available across healthcare settings. A KIS provides clinicians with essential information to guide decision making for people likely to need emergency or out-of-hours care.

AIM:

To estimate the proportion of people with an advanced progressive illness with a KIS by the time of death, to examine when planning information is documented, and suggest improvements for electronic care coordination systems.

DESIGN AND SETTING:

This was a mixed-methods study involving 18 diverse general practices in Scotland.

METHOD:

Retrospective review of medical records of patients who died in 2017, and semi-structured interviews with healthcare professionals were conducted.

RESULTS:

Data on 1304 decedents were collected. Of those with an advanced progressive illness (79%, n = 1034), 69% (n = 712) had a KIS. These were started a median of 45 weeks before death. People with cancer were most likely to have a KIS (80%, n = 288), and those with organ failure least likely (47%, n = 125). Overall, 68% (n = 482) of KIS included resuscitation status and 55% (n = 390) preferred place of care. People with a KIS were more likely to die in the community compared to those without one (61% versus 30%). Most KIS were considered useful/highly useful. Up-to-date free-text information within the KIS was valued highly.

CONCLUSION:

In Scotland, most people with an advanced progressive illness have an electronic care coordination record by the time of death. This is an achievement. To improve further, better informal carer information, regular updating, and a focus on generating a KIS for people with organ failure is warranted.

KEYWORDS:

after-hours care; digital health; electronic palliative care coordination systems; general practice; palliative care; primary health care

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