Epilepsy care during the COVID-19 pandemic.

The coronavirus disease 2019 (COVID-19) pandemic has affected the care of all patients around the world. The International League Against Epilepsy (ILAE) COVID-19 and Telemedicine Task Forces examined, through surveys to people with epilepsy (PWE), caregivers, and health care professionals, how the pandemic has affected the well-being, care, and services for PWE. The ILAE included a link on their website whereby PWE and/or their caregivers could fill out a survey (in 11 languages) about the impact of the COVID-19 pandemic, including access to health services and impact on mental health, including the 6-item Kessler Psychological Distress Scale. An anonymous link was also provided whereby health care providers could report cases of new-onset seizures or an exacerbation of seizures in the context of COVID-19. Finally, a separate questionnaire aimed at exploring the utilization of telehealth by health care professionals since the pandemic began was available on the ILAE website and also disseminated to its members. Seventeen case reports were received; data were limited and therefore no firm conclusions could be drawn. Of 590 respondents to the well-being survey (422 PWE, 166 caregivers), 22.8% PWE and 27.5% caregivers reported an increase in seizure frequency, with difficulty in accessing medication and health care professionals reported as barriers to care. Of all respondents, 57.1% PWE and 21.5% caregivers had severe psychological distress (k score >13), which was significantly higher among PWE than caregivers (p<0.01). An increase in telemedicine use during the COVID-19 pandemic was reported by health care professionals, with 40% of consultations conducted by this method. Although 74.9% of health care providers thought that this impacted positively, barriers to care were also identified. As we move forward, there is a need to ensure ongoing support and care for PWE to prevent a parallel pandemic of unmet health care needs.

The initial impact of the SARS-CoV-2 pandemic on epilepsy research.

The COVID-19 pandemic has changed the face of many practices throughout the world. Through necessity to minimize spread and provide clinical care to those with severe disease, focus has been on limiting face-to-face contact. Research in many areas has been put on hold. We sought to determine the impact of the COVID-19 pandemic on epilepsy research from international basic science and clinical researchers. Responses to five questions were solicited through a convenience sample by direct email and through postings on the ILAE social media accounts and an ILAE online platform (utilizing Slack). Information was collected from 15 respondents in 11 countries by email or via Zoom interviews between May 19, 2020, and June 4, 2020. Several themes emerged including a move to virtual working, project delays with laboratory work halted and clinical work reduced, funding concerns, a worry about false data with regard to COVID research and concern about research time lost. However, a number of positive outcomes were highlighted, not least the efficiency of online working and other adaptations that could be sustained in the future.

Service and value co-production and co-creation in emergency services and emergency management

Service and value co-production and co-creation in emergency services and emergency management Introduction This special issue explores the phenomenon of co-producing and co-creating services, policies and knowledge and the creation or destruction of value in the delivery of emergency services and more broadly in the research and practice of emergency management. Examples of this shift can be seen in the Federal Emergency Management Agency’s promotion of the “Whole Community” approach (FEMA, 2011) and the recently released “Building cultures of Preparedness” (FEMA, 2018). [...]service users and policy recipients now have to be taken into account during the design stage of a service since “the delivery and management of services are no longer just the preserve of professionals and managers — users and other members of the community are playing a large role in shaping decisions and outcomes” (Boivard, 2007, p. 846). According to this perspective co-production entails the conscious or unconscious participation of the user in the delivery of the service as well as the creation or destruction of value (Osborne et al., 2016). (2019) have demonstrated how public value can be produced and/or created at the level of the individual as well as at the collective level and that it can be produced or created at the same time as private value is being created. [...]public and private entities and citizens can create public and private value and may at times create both simultaneously.