Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 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

Affiliations

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

Anne M Finucane et al. Br J Gen Pract. .

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.

PubMed Disclaimer

Figures

Figure 1.
Figure 1.
Proportion of patients with a Key Information Summary (KIS) in place before death, and if so, the median number of weeks before death KIS was started by trajectory. Percentages rounded to nearest whole.
Figure 2.
Figure 2.
Place of death for patients with and without a KIS (n = 1034). Percentages rounded to nearest whole. KIS = Key Information Summary.

References

    1. Mason B, Buckingham S, Finucane A, et al. Improving primary palliative care in Scotland: lessons from a mixed methods study. BMC Fam Pract. 2015;16:176. - PMC - PubMed
    1. Mason B, Epiphaniou E, Nanton V, et al. Coordination of care for individuals with advanced progressive conditions: a multi-site ethnographic and serial interview study. Br J Gen Pract. 2013. - DOI - PMC - PubMed
    1. Petrova M, Riley J, Abel J, Barclay S. Crash course in EPaCCS (Electronic Palliative Care Coordination Systems): 8 years of successes and failures in patient data sharing to learn from. BMJ Support Palliat Care. 2018;8(4):447–455. - PMC - PubMed
    1. Allsop MJ, Kite S, McDermott S, et al. Electronic palliative care coordination systems: devising and testing a methodology for evaluating documentation. Palliat Med. 2017;31(5):475–482. - PMC - PubMed
    1. Scottish Clinical Information Management in Practice Key information summary. https://www.scimp.scot.nhs.uk/key-information-summary (accessed 25 Nov 2019)

MeSH terms

LinkOut - more resources