A scoping review of patient engagement activities during COVID-19: More consultation, less partnership.

BACKGROUND: The COVID-19 pandemic has had a devastating impact on healthcare systems and care delivery, changing the context for patient and family engagement activities. Given the critical contribution of such activities in achieving health system quality goals, we undertook to address the question: What is known about work that has been done on patient engagement activities during the pandemic? OBJECTIVE: To examine peer-reviewed and grey literature to identify the range of patient engagement activities, broadly defined (inclusive of engagement to support clinical care to partnerships in decision-making), occurring within health systems internationally during the first six months of the COVID-19 pandemic, as well as key barriers and facilitators for sustaining patient engagement activities during the pandemic. METHODS: The following databases were searched: Medline, Embase and LitCOVID; a search for grey literature focused on the websites of professional organizations. Articles were required to be specific to COVID-19, describe patient engagement activities, involve a healthcare organization and be published from March 2020 to September 2020. Data were extracted and managed using Microsoft Excel. A content analysis of findings was conducted. RESULTS: Twenty-nine articles were included. Few examples of more genuine partnership with patients were identified (such as co-design and organizational level decision making); most activities related to clinical level interactions (e.g. virtual consultations, remote appointments, family visits using technology and community outreach). Technology was leveraged in almost all reported studies to interact or connect with patients and families. Five main descriptive categories were identified: (1) Engagement through Virtual Care; (2) Engagement through Other Technology; (3) Engagement for Service Improvements/ Recommendations; (4) Factors Impacting Patient Engagement; and (5) Lessons Learned though Patient Engagement. CONCLUSIONS: Evidence of how healthcare systems and organizations stayed connected to patients and families during the pandemic was identified; the majority of activities involved direct care consultations via technology. Since this review was conducted over the first six months of the pandemic, more work is needed to unpack the spectrum of patient engagement activities, including how they may evolve over time and to explore the barriers and facilitators for sustaining activities during major disruptions like pandemics.

Patients with Rheumatic Diseases Overlooked during COVID-19 Pandemic: How are They Doing and Behaving?

BACKGROUND: People with rheumatic disease may be at higher risk for more severe course with COVID- 19, and the adverse effects of drugs used to treat rheumatic diseases is a major concern. OBJECTIVE: We conducted this survey to learn about the real impact of COVID-19 pandemic on patients with rheumatic diseases. METHODS: Participants were asked to complete a questionnaire using a telephonic interview conducted by two rheumatologists. Rheumatic disease characteristics, knowledge and attitude toward COVID-19, and impacts of pandemic on rheumatology care and patient's compliance were assessed. RESULTS: We included 307 patients in the survey, and rheumatoid arthris was the main rheumatic disease. Patients had mostly moderate level of knowledge about COVID-19, and patients with higher level of education were more likely to have better knowledge. Participants respected mainly recommended preventive measures. The pandemic and sanitary containment impacted strongly the rheumatology care. Over quarter of patients noted worsening of their rheumatic disease, two-thirds reported postponed or canceled medical apointments and more than three quarters postponed their laboratory tests. Patients with higher disease activity were more likely to have lack of follow-up. Medication change was noted in more than third of cases. It was mostly stopped, and DMARDs were mainly affected. Patients living in rural areas and who had canceled, or postponed their appointments were more likely to change their treatment. CONCLUSION: Our data are useful to better manage rheumatic patients. Physicians are encouraged to renew contact with their patients to insure medication compliance.

Challenging misconceptions about clinical ethics support during COVID-19 and beyond: a legal update and future considerations.

The pace of change and, indeed, the sheer number of clinical ethics committees (not to be confused with research ethics committees) has accelerated during the COVID-19 pandemic. Committees were formed to support healthcare professionals and to operationalise, interpret and compensate for gaps in national and professional guidance. But as the role of clinical ethics support becomes more prominent and visible, it becomes ever more important to address gaps in the support structure and misconceptions as to role and remit. The recent case of Great Ormond Street Hospital for Children NHS Foundation Trust v MX, FX and X ([2020] EWHC 1958 (Fam), [21]-[23] and [58]) has highlighted the importance of patient/family representation at clinical ethics committee meetings. The court viewed these meetings as making decisions about such treatment. We argue that this misunderstands the role of ethics support, with treatment decisions remaining with the clinical team and those providing their consent. The considered review by clinical ethics committees of the moral issues surrounding complex treatment decisions is not a matter of determining a single ethical course of action. In this article, we consider current legal understandings of clinical ethics committees, explore current concepts of ethics support and suggest how they may evolve, considering the various mechanisms of the inclusion of patients and their representatives in ethics meetings which is not standard in the UK.

[COVID-19 and vaccination: a global disruption]. / COVID-19 et vaccination : une dérégulation globale.

Coronavirus disease (COVID)-19 is an emerging pandemic infection whose significant ability to spread in a naïve population is well established. The first response of states to the COVID-19 outbreak was to impose lock-down and social barrier measures, such as wearing a surgical mask or social distancing. One of the consequences of this pandemic in terms of public health was the suspension or slowdown of infant vaccination campaigns, in almost all countries. The indirect effects of COVID-19 may therefore weigh on mortality from measles and polio in developing countries. In this pandemic chaos, the only hope lies in the rapid development of an effective vaccine against severe acute respiratory syndrome-coronavirus-2 (SARS-CoV-2). However, acceptance of this vaccine has not yet been won, as beyond the many unknowns that will inevitably weigh around such rapid development, skepticism among vaccine hesitants is growing.

TITLE: COVID-19 et vaccination : une dérégulation globale. ABSTRACT: La COVID-19 est une infection pandémique émergente dont l'importante capacité à se propager dans une population dénuée d'immunité n'est plus à prouver. La première réponse des États à la flambée de COVID-19 fut d'imposer un confinement et des mesures barrières, telles que le port du masque et la distanciation sociale. Une des répercussions de cette pandémie, en matière de santé publique, fut la suspension ou le ralentissement brusque des campagnes de vaccination des nourrissons, un peu partout dans le monde. Un des effets indirects de la COVID-19 est donc le risque de peser sur la mortalité mondiale, principalement via une recrudescence de la rougeole et de la poliomyélite, principalement dans les pays en voie de développement. Dans ce chaos potentiel, le seul espoir réside dans le développement rapide d'un vaccin efficace contre le SARS-CoV-2 (severe acute respiratory syndrome-coronavirus-2). Cependant, l'acceptation de ce vaccin par la population n'est pas évidente, car outre les nombreuses inconnues qui vont peser inévitablement dans le cas d'un développement très rapide du vaccin, le scepticisme des hésitants vaccinaux va à nouveau se développer.

YouTube as a source of patient information for Coronavirus Disease (COVID-19): A content-quality and audience engagement analysis.

YouTube is the second most popular website in the world and is increasingly being used as a platform for disseminating health information. Our aim was to evaluate the content-quality and audience engagement of YouTube videos pertaining to the SARS (severe acute respiratory syndrome)-CoV-2 virus which causes the Coronavirus Disease 2019 (COVID-19), during the early phase of the pandemic. We chose the first 30 videos for seven different search phrases: "2019 nCoV," "SARS CoV-2," "COVID-19 virus," "coronavirus treatment," "coronavirus explained," "what is the coronavirus" and "coronavirus information." Video contents were evaluated by two independent medical students with more than 5 years of experience using the DISCERN instrument. Qualitative data, quantitative data and upload source for each video was noted for a quality and audience engagement analysis. Out of the total 210 videos, 137 met our inclusion criteria and were evaluated. The mean DISCERN score was 31.33 out of 75 possible points, which indicates that the quality of YouTube videos on COVID-19 is currently poor. There was excellent reliability between the two raters (intraclass correlation coefficient = 0.96). 55% of the videos discussed prevention, 49% discussed symptoms and 46% discussed the spread of the virus. Most of the videos were uploaded by news channels (50%) and education channels (40%). The quality of YouTube videos on SARS-CoV-2 and COVID-19 is poor, however, we have listed the top-quality videos in our article as they may be effective tools for patient education during the pandemic.