Care Research Network Research Articles

Lessons from a research partnership in southwest England to understand community palliative care needs in rural, coastal and low-income communities.

The South West Peninsula (Cornwall, Devon, Somerset) has the highest proportion of over 65s (24.2%) and is the only English rural population with greater economic deprivation than in urban areas. Coastal populations have the worst health outcomes in England. Despite innovation among communities to support those with health and care needs in later life, recruitment to palliative care research in the region is low and there has been no evaluation of public health palliative care interventions. A new South West Peninsula Palliative Care Research Partnership was funded for 15 months, bringing together four universities, the voluntary and community sector (including hospices) and local National Institute for Health and Care Research networks. The aim was to establish a sustainable multisectoral partnership that would identify community-based support needs for underserved rural and coastal populations by: • conducting a literature scoping review on interventions to enable community members to support the dying; • delivering a research capacity-building programme; • co-creating public and patient involvement capacity; • determining the resources and needs for communities to support dying well; • integrating findings to develop a framework of community-based support and identify future research questions; • establishing a sustainable research network infrastructure for the long-term design and delivery of palliative care research. We convened partners to identify research needs and co-designed activities to meet our objectives. These included a scoping review; a capacity-building programme of training, seminars and a journal club; forming a patient and public involvement group; a multistranded community engagement programme using different creative approaches; four focus groups with members of the public and one with community workers; and producing three 'storytelling' audio recordings. Findings were presented to the partnership at a regional workshop. The scoping review showed that community-engaged palliative care interventions can improve outcomes for individuals but provided little evidence about which approaches work for different communities. Five online seminars and a quarterly journal club to develop research capacity were regularly attended by 15 to 25 participants from across the partnership. While evaluating our engagement methods was beyond the partnership's scope, levels of participation suggested that creative methods of engagement show potential to help researchers and practitioners better understand the needs and priorities of underserved populations. Data showed that rural, coastal and low-income communities face challenges in accessing end-of-life care and support due to issues such as transport to and distance from services, erosion of neighbourhood networks, isolation from family and friends, 'patchiness' of palliative care services and a lack of care providers. Community organisations are well-placed to co-produce and facilitate methodologies for involving communities in palliative care research. Although activities took place in diverse areas, it was not possible within the available resources to cover the entire large geographical region, particularly the most isolated rural areas. Partnerships bringing together voluntary and community sector organisations, palliative care providers, health and social care providers, individuals with experience and academics have potential to design future research and public health interventions that better understand local context, involving and supporting communities to address their needs at end of life. This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme as award number NIHR135312.

The use of multi-sourced linked datasets in evaluating the Emergency Medical Retrieval and Transfer Service (EMRTS) CYMRU

ABSTRACT
 ObjectivesEMRTS launched in April 2015 which saw consultants join critical care practitioners on air ambulance missions and emergency response vehicles. EMRTS delivers pre hospital, Emergency Department equivalent critical care for people in Wales with life or limb threatening injuries or illness from scene to definitive care. The evaluation will compare patients treated by EMRTS to cases both pre-EMRTs and EMRTS-offline (at night or bad weather) in improving survival and functional and quality of life outcomes.
 ApproachThe evaluation will require the use of multiple datasets to follow patients from time of incident, throughout hospital care and to calculate post care health status. Electronic reporting forms will be used to measure incident details, patient vitals and all treatments/procedures pre hospital, creating the EMRTS dataset and cohort. Patients’ data will be linked to the Emergency Department Dataset (EDDS), Patient Episode Database for Wales (PEDW), Critical Care dataset, Trauma Audit and Research Network (TARN) and Intensive Care National Audit and Research Centre (ICNARC). TARN and ICNARC will provide data on patients transferred to English specialist care facilities.
 ONS (Office of National Statistics) and WDS (Welsh Demographic Service) data will be used for demographic and survival analysis.
 GIS techniques will be used on WAST (Welsh Ambulance Service Trust) data for time saved analysis in transferring patients to definitive care.
 Following discharge from hospital patients will be interviewed six months and one-year post incident for longer-term functional and quality of life outcomes.
 ResultsDatasets are currently being assembled for the service evaluation. Data will be encrypted and anonymized through NWIS (NHS Wales Informatics Service) to enable research through the Secure Anonymised Information Linkage (SAIL) facility. Results will include rate of survival, effect on length of hospital stay, time to definitive care, the use and appropriateness of EMRTs specific interventions and functional and quality of life outcomes.
 ConclusionsTo allow for data collection the service evaluation is still in the early stages and will be compared with local and international data.

Bringing a 'best practices' theme to Family Practice

Greetings to the international community of Family Practice readers, authors and peer reviewers. I’m honoured to succeed Brendan Delaney as the new editorin-chief. In this inaugural editorial, I would like to introduce myself and discuss a few plans that have emerged from a recent strategic planning initiative. Best regards to Brendan and editorial assistant, Vivienne Tsimbili, both of whom will focus on new endeavours (Brendan will remain on as an associate editor). Our new editorial assistant is Louise Whelan, who has worked in publishing for >10 years, with experience as a production editor, team leader and journal publishing manager. She also worked as a freelance editorial assistant for a number of titles, where she acquired experience with the peer-review process and the ScholarOne manuscript management system. Louise holds a degree in marine biology, and she is an on-call marine mammal medic for the British Divers Marine Mammal Rescue organization. You can contact Louise at fampra.editorialoffice@oxfordjournals .org. I am confident that you will find her a pleasure to work with. Although there is a lot to learn about the Family Practice editorial processes from the perspective of the editor-in-chief, I have served as an associate editor since 2006. A year ago, I started as editor-elect focusing on strategic planning, which included a survey of the editorial board to obtain suggestions for process improvements and future directions. This resulted in a review of procedures to identify opportunities for reducing the time lag from manuscript submission to first decision. To that end, we have already instituted changes that take greater advantage of the efficiencies provided by the Scholar One system. A current project underway includes expanding the keyword list to improve our ability to match reviewers to manuscripts. Other process improvements will be opaque to authors and readers but should contribute to our objective to improve response time. Additional suggestions from the editorial board survey included: refresh the peer reviewer data base, increase the visibility of Family Practice internationally and develop a mechanism to acknowledge the service contributions of peer reviewers for the purpose of supporting applications for tenure or promotion. We are working on all of these! My own research interests currently center on identifying research best practices specific to primary care research and practice-based research network (PBRN) settings. Recently, I conducted a study titled

Women's Health Care Practice and Research Network

Women's Health Care Practice and Research Network