Alberta Health Services Emergency Strategic Clinical Network Quality Improvement and Innovation forum 2021

The Alberta Health Services Emergency Strategic Clinical Network Quality Improvement and Innovation forum 2021. Patrick McLane and Eddy Lang on behalf of the Emergency Strategic Clinical Network Evidence-based research and quality improvement work are pivotal to health systems meeting their goals. Translating findings and disseminating innovative practices to new settings occurs in part through knowledge translation events, such as conferences and workshops. The Emergency Strategic Clinical NetworkTM (ESCN) Quality Improvement and Innovation forum fills a gap between local and national events. It is devoted to sharing methods and results of emergency department projects in Alberta among those working in emergency care. 2021 was the third consecutive year the ESCN has held this event. The event provides an opportunity for those working on quality improvement in emergency medicine to network with one another, share innovative projects, share know how and translate promising works to new settings. In addition, the event provides an opportunity to identify projects for potential development through local, provincial, or national funding opportunities. In light of the ongoing pandemic, this year’s forum was held virtually with the support of the University of Calgary Continuing Medical Education group. Funding was kindly provided by the College of Physicians and Surgeons of Alberta. Nineteen teams presented their projects orally. Invited nurse and clinician scientists ranked all submissions to the forum, and the top ranked submissions were recognized in the following categories:Submissions by ESCN staff and the event sponsor were not eligible for recognition. A new feature this year was a presentation by ESCN patient advisors on their perspectives on quality improvement, which was well received by all. Strong attendance shows the value practitioners see in the forum. In 2021, the forum was attended by approximately 140 educators, managers, nurses, physicians and researchers from across Alberta. This is a marked increase over previous years. Post-event evaluation survey feedback suggests that the online format was greatly appreciated and made the event more accessible. Requests for more rural oriented content in event feedback may also indicate that the event drew more rural attendees this year. We are pleased to partner with the Canadian Journal of Emergency Nursing to make abstracts from the event widely available. Individual presenters have had the option of submitting their abstracts for publication in CJEN. In some instances, abstracts have already been published through other conferences and so could not be submitted to CJEN. The findings presented in the abstracts are solely the work of the submitting authors. The ESCN does not guarantee the accuracy of any reported information. The views expressed in the abstracts are solely the views of the authors and do not represent the ESCN or Alberta Health Services. Correspondence to: [email protected]

The Italian National Registry for FSHD: An Enhanced Data Integration and an Analytics Framework Towards Smart Health Care and Precision Medicine for a Rare Disease

BACKGROUNDThe Italian Clinical network for FSHD (ICNF) has established the Italian National Registry for FSHD (INRF), collecting data from patients affected by Facioscapulohumeral dystrophy (FSHD) and their relatives. The INRF has gathered data from molecular analysis, clinical evaluation, anamnestic information, and family history from more than 3500 participants. METHODSA data management framework, called MOMIS FSHD Web Platform, has been developed to provide charts, maps and search tools customized for specific needs. Patients’ samples and their clinical information derives from the Italian Clinical network for FSHD (ICNF), a consortium consisting of fourteen neuromuscular clinics distributed across Italy. The tools used to collect, integrate, and visualize clinical, molecular and natural history information about patients affected by FSHD and their relatives are described.RESULTSThe INRF has collected the molecular data of FSHD conducted on 7197 subjects, and identified 3362 individuals carrying a DRA: 1634 are unrelated individuals, 602 isolated cases. In 1032 cases the molecular testing has been extended to 3747 relatives, 1728 carrying a DRA. Since 2009 molecular analysis has been accompanied by clinical evaluation based standardized evaluation protocols. In total 3577 clinical forms have been collected, 2059 follow the Comprehensive Clinical Evaluation form (CCEF). The integration of standardized clinical information and molecular data has made possible to demonstrate the wide phenotypic variability of FSHD. The MOMIS (Mediator Environment for Multiple Information Sources) data integration framework allowed performing genotype-phenotype correlation studies, and generated information of medical importance either for clinical practice or genetic counseling.CONCLUSIONThe platform implemented for the FSHD Registry data collection based on OpenClinica meets the requirement to integrate patient/disease information, as well as the need to adapt dynamically to security and privacy concerns. Our results indicate that the quality of data collection in a multi-integrated approach is fundamental for clinical and epidemiological research in a rare disease and allows to redefine diagnostic criteria and disease markers for FSHD.

Abstract P162: Racial and Gender Disparities in a Stroke Clinical Network

Introduction: Earlier studies have suggested that disparities in stroke care exist for racial and gender groups. Our objective was to examine compliance with defect free care for these groups in a stroke clinical network. Defect free care gauges compliance with the delivery of selected core metrics reflecting best practices. The stroke clinical network providers and stakeholders have been meeting for over 5 years to share best practices and perform improvement projects. The Stroke Clinical Network consists of nine stroke centers located in rural, suburban and urban geographical regions. Methods: Stroke coordinators at nine stroke centers (8 PSCs and 1 CSC) used the GWTG registry to obtain Defect-Free reports using the filters: male, female, African American and white. Populations included patients with a diagnosis of stroke, ICH and SAH. Data was collected for Jan 2016-December 2019. The proportion of defect free compliance was calculated for these subgroups: African American, white, male and female. Results: There was not a difference in defect free care compliance between African American and white stroke populations (AA defect free 90% 2355/2583; white defect free 89% 4176/4685). The range for defect free compliance for AA was 70-98%. The lowest score of 70% was in an urban hospital. The range for defect free compliance for whites was 82-97%. There was not a difference in defect free care between male and female patients (female defect free 92% 5311/5771; male defect free 90% 4646/5211). The range for defect free compliance for females was 78-98%. The range for defect free compliance for males was 70-98%. For all patients in the stroke clinical network defect free care compliance was 91% (9957/10982). Conclusions: In a geographically diverse Stroke Clinical Network there were no disparities in defect care compliance due to gender or race. Future plans include performing a deep dive of the individual care measures to identify opportunities for improvement. The results indicate having an effective Stroke Clinical Network in which best practices and standardization of care are achieved provides an effective strategy to improve defect-care compliance across a network of hospitals.

Development of a managed clinical network for children’s palliative care – a qualitative evaluation

Background Consistent evidence suggests that children’s palliative care is not equitable and managed clinical networks (MCNs) have been recommended as a solution. This study explored the perspectives of health professionals involved in the development of a children’s palliative care MCN, with an aim to identify barriers and enablers of successful implementation. Methods Thematic analysis of semi-structured interviews and focus groups with 45 healthcare staff with a role in developing the MCN or in the delivery of children’s palliative care (September 2019–March 2020). Results The study explored health professionals’ perceptions of the MCN features that had helped to formalise governance processes, establish training and networking opportunities, standardise practice, and improve collaboration between organisations. These include the funded MCN co-ordinator, committed individuals who lead the MCN, and a governance structure that fosters collaboration. However, the MCN’s development was impeded by cross-cutting barriers including limited funding for the MCN and children’s palliative care more generally, no shared technology, lack of standards and evidence base for children’s palliative care, and shortage of palliative care staff. These barriers impacted on the MCN’s ability to improve and evaluate palliative care provision and affected member engagement. Competing organisational priorities and differences between NHS and non-NHS members also impeded progress. Training provision was well received, although barriers to access were identified. Conclusions Key features of children’s palliative care can act as barriers to developing a managed clinical network. Managing expectations and raising awareness, providing accessible and relevant training, and sharing early achievements through ongoing evaluation can help to sustain member engagement, which is crucial to a network’s success.

Development of a Managed Clinical Network for Children’s Palliative Care – A Qualitative Evaluation

Background Consistent evidence suggests that children’s palliative care is not equitable and managed clinical networks (MCNs) have been recommended as a solution. This study explored the perspectives of health professionals involved in the development of a children’s palliative care MCN, with an aim to identify barriers and enablers of successful implementation.Methods Thematic analysis of semi-structured interviews and focus groups with 45 healthcare staff with a role in developing the MCN or in the delivery of children’s palliative care (September 2019-March 2020). Results The study explored health professionals’ perceptions of the MCN features that had helped to formalise governance processes, establish training and networking opportunities, standardise practice, and improve collaboration between organisations. These include the funded MCN co-ordinator, committed individuals who lead the MCN, and a governance structure that fosters collaboration. However, the MCN’s development was impeded by cross-cutting barriers including limited funding for the MCN and children’s palliative care more generally, no shared technology, lack of standards and evidence-base for children’s palliative care, and shortage of palliative care staff. These barriers impacted on the MCN’s ability to improve and evaluate palliative care provision and affected member engagement. Competing organisational priorities and differences between NHS and non-NHS members also impeded progress. Training provision was well received, although barriers to access were identified. Conclusions Key features of children’s palliative care can act as barriers to developing a managed clinical network. Managing expectations and raising awareness, providing accessible and relevant training, and sharing early achievements through ongoing evaluation can help to sustain member engagement, which is crucial to a network’s success.