Developing a computerised search to help UK General Practices identify more patients for palliative care planning: a feasibility study.

BACKGROUND: Approximately 600,000 people die in the UK annually, usually after months or years of increasing debility. Many patients with advanced conditions are not identified for appropriate support before they die because they are not seen as having "palliative" care needs. General practice information technology systems can improve care by identifying patients with deteriorating health so that their healthcare needs can be reviewed more systematically and effectively. The aim was to develop and test a computerised search of primary care records in routine clinical practice as a tool to improve patient identification for a palliative care approach. METHODS: An iterative process of search design and testing followed by implementation and extended testing of the search output in clinical practice. A three-phase feasibility study: developing a computerised search, determining its ability to identify patients with deteriorating health from any advanced condition, and assessing how primary care clinicians use the results to improve patient care. The setting was twelve primary care teams in two Health Boards in Scotland. RESULTS: The search identified 0.6-1.7 % of patients in each practice who were not already on the palliative care register. Primary care clinicians judged that 30-60 % of these patients were at risk of dying or deterioration over the next 6-12 months. The most common action taken by GPs was to start an electronic anticipatory care plan. CONCLUSIONS: It is possible to significantly improve the identification of patients for palliative care needs assessment using a computerised search however barriers remain to GPs' finding it acceptable. Time-efficient systems were important as was a generic tool for anticipatory care planning not linked to 'palliative' care.

Mapping the progress and impacts of public health approaches to palliative care: a scoping review protocol.

INTRODUCTION: Public health palliative care is a term that can be used to encompass a variety of approaches that involve working with communities to improve people's experience of death, dying and bereavement. Recently, public health palliative care approaches have gained recognition and momentum within UK health policy and palliative care services. There is general consensus that public health palliative care approaches can complement and go beyond the scope of formal service models of palliative care. However, there is no clarity about how these approaches can be undertaken in practice or how evidence can be gathered relating to their effectiveness. Here we outline a scoping review protocol that will systematically map and categorise the variety of activities and programmes that could be classified under the umbrella term 'public health palliative care' and highlight the impact of these activities where measured. METHODS AND ANALYSIS: This review will be guided by Arksey and O'Malley's scoping review methodology and incorporate insights from more recent innovations in scoping review methodology. Sensitive searches of 9 electronic databases from 1999 to 2016 will be supplemented by grey literature searches. Eligible studies will be screened independently by two reviewers using a data charting tool developed for this scoping review. ETHICS AND DISSEMINATION: This scoping review will undertake a secondary analysis of data already collected and does not require ethical approval. The results will facilitate better understanding of the practical application of public health approaches to palliative care, the impacts these activities can have and how to build the evidence base for this work in future. The results will be disseminated through traditional academic routes such as conferences and journals and also policy and third sector seminars.

How do people with cancer wish to be cared for in primary care? Serial discussion groups of patients and carers.

BACKGROUND: In most economically developed countries, patients, their informal and professional carers and policy makers are calling for more care in the community. OBJECTIVES: To involve patients with cancer, and their carers, in designing a framework for providing effective cancer care in primary care. METHODS: Two discussion groups comprising 18 people with current cancer and carers met monthly over a year in the south of Scotland. RESULTS: Patients with cancer and their carers identified five key times in the cancer journey as being especially significant from their perspective: around diagnosis, during treatment, after discharge, at recurrence and the final weeks. At each key time, there were five major issues of concern: information, communication, equity, a holistic approach and patient-centred care. Using these, the group members developed a checklist of recommended interventions for each stage in the illness trajectory and suggested how they might be implemented in primary care. Proactive and ongoing contact, if wished by the patient, was considered the central plank of cancer care in the community. CONCLUSIONS: Patients with cancer and their carers believe that there is an important and unique role for primary care in offering continuity of care and information that is patient-centred and holistic, throughout the cancer trajectory, from first presentation. This study successfully brought patient, carer and professional perspectives to the development of a care framework for primary care.