Crash course in EPaCCS (Electronic Palliative Care Coordination Systems): 8 years of successes and failures in patient data sharing to learn from

Petrova, Mila; Riley, Julia; Abel, Julian; Barclay, Stephen

doi:10.1136/bmjspcare-2015-001059

Cited by 65 publications

(108 citation statements)

References 28 publications

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“…Joint electronic patient records or mutual access to patient records, among all levels of care providers can improve information transfer among care providers in the hospital and in the community. 509 Telehealth is also being explored as an intervention to improve communication in palliative care, particularly for those living in rural regions. 510…”

Section: Human Resources and Clinical Competenciesmentioning

confidence: 99%

Integration of oncology and palliative care: a Lancet Oncology Commission

Kaasa

Loge

Aapro

et al. 2018

The Lancet Oncology

575

539

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Presence of palliative care inpatient consultation team Presence of palliative care outpatient clinic Presence of community based / home palliative care Clinical processes (*) Presence of multidisciplinary specialized palliative care team Routine symptom screening in the outpatient oncology clinic Administration of systemic cancer therapy (e.g. chemo and targeted agents) possible in patients admitted to PC service oncology-and palliative care as well as their cultures. Local variations in terms of resources and practices also probably play a role. By acknowledging integration of oncology and PC as a complex process including different parts of the health care system, both horizontally and vertically, and also involving the patient, we propose SCPs as a means for future efforts to promote integration. For the same reasons, this paper will address integration in different panels. Each panel will address different aspects of integration, ranging from how to focus on the patient, to societal changes and new research areas. Introduction of panels Policy-challenges and frameworks Societal challenges Prognostication Patient-centredness-content methodology and clinical implications Models of palliative care integration The role of education: challenges and recommendations Research The commission is an international collaboration between 30 experts in oncology, PC, public health and psycho-oncology. In October 2016 a kick-off meeting was held in Milan where panel leaders were appointed, the structure of the commission was decided, and a plan for the work was agreed upon. During the two following years each panel expanded with experts within the relevant field, conducted topical literature searches, and an interactive writing process was conducted. Both administrative and academic organization were run from Norway, by Stein Kaasa, Jon Håvard Loge and Tonje Lundeby. Policy-challenges and frameworks Questions to be addressed What type of recommendations is given for integration at the national and international level on policy and public health at present? What are the current examples of different practices in organization of palliative care in different national policies in European countries? What kind of policies and approaches are needed for integration of oncology and palliative care? Patient-centredness-content, methodology and clinical implications Questions to be addressed What is patient-centredness? What are the main elements of patient-centred care in practice? How do we involve the family? Communication-a necessary tool for patient-centred care What are the barriers and solutions to succeed? Research Questions to be addressed What are some opportunities and challenges for integrating oncology and palliative care teams to conduct research together? What are some key research priorities related to integration of palliative care and oncology? What are some key research priorities related to symptom assessment and treatment? What are some key research priorities related to psychosocial support, communication and dec...

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Section: Human Resources and Clinical Competenciesmentioning

confidence: 99%

Integration of oncology and palliative care: a Lancet Oncology Commission

Kaasa

Loge

Aapro

et al. 2018

The Lancet Oncology

575

539

View full text Add to dashboard Cite

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“…The IMD score is an UK government's official measure. [21] It is a composite score derived from seven domains: income, employment, health and disability, education skills and training, barriers to housing and services, crime and disorder, and living environment. The linkage was done by the CPRD through the postcodes of the practices with which patients were registered.…”

Section: Study Variablesmentioning

confidence: 99%

Primary care service use by end-of-life cancer patients: a nationwide population-based cohort study in the United Kingdom

Gao

Gulliford

Morgan

et al. 2020

Preprint

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Background End of life(EoL) care becomes more complex and increasingly takes place in the community, but there is little data on the use of general practice(GP) services to guide care improvement. This study aims to determine the trends and factors associated with GP consultation, prescribing and referral to other care services amongst cancer patients in the last year of life. Methods A retrospective cohort study of cancer patients who died in 2000-2014, based on routinely collected primary care data(the Clinical Practice Research DataLink, CPRD) covering a representative sample of the population in the United Kingdom. Outcome variables were number of GP consultations(primary), number of prescriptions and referral to other care services(yes vs no) in the last year of life. Explanatory variables included socio-demographics, clinical characteristics and the status of palliative care needs recognised or not. The association between outcome and explanatory variables were evaluated using multiple-adjusted risk ratio(aRR). Results Of 68,523 terminal cancer patients, 70% were aged 70+, 75% had comorbidities and 45.5% had palliative care needs recognised. In the last year of life, a typical cancer patient had 43 GP consultations(Standard deviation(SD): 31.7; total=3,031,734), 71.5 prescriptions(SD: 68.0; total=5,074,178), and 21(SD: 13.0) different drugs; 58.0% of patients had at least one referral covering all main clinical specialities. More comorbid conditions, prostate cancer and having palliative care needs recognised were associated with more primary care consultations, more prescriptions and a higher chance of referral(aRRs 1.07-2.03). Increasing age was related to fewer consultations(aRRs 0.77-0.96), less prescriptions(aRR 1.09-1.44), and a higher chance of referral(aRRs 1.08-1.16) but less likely to have palliative care needs recognised(aRRs 0.53-0.89). Conclusions GPs are very involved in end of life care of cancer patients, most of whom having complex care needs, i.e. older age, comorbidity and polypharmacy. This highlights the importance of enhancing primary palliative care skills among GPs and the imperative of greater integration of primary care with other healthcare professionals including oncologists, palliative care specialists, geriatricians and pharmacists. Research into the potential of deprescribing is warranted. Older patients have poorer access to both primary care and palliative care need to be addressed in future practices.

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“…To our knowledge, the only directly comparable study is of PMs and primary care providers in the state of Michigan, US. [46] The survey was part of a research-evaluation study of the Cambridgeshire & Peterborough Project for Data Sharing in End of Life Care (the C&P Project), initiated in 2012 as an Electronic Palliative Care Coordination System (EPaCCS) project. [47] Its core questions were: 1) What are GPs' and PMs' self-reported levels of familiarity with and use of different data sharing tools?…”

Section: Introductionmentioning

confidence: 99%