Public opinion on sharing data from health services for clinical and research purposes without explicit consent: an anonymous online survey in the UK.

OBJECTIVES: UK National Health Service/Health and Social Care (NHS/HSC) data are variably shared between healthcare organisations for direct care, and increasingly de-identified for research. Few large-scale studies have examined public opinion on sharing, including of mental health (MH) versus physical health (PH) data. We measured data sharing preferences. DESIGN/SETTING/INTERVENTIONS/OUTCOMES: Pre-registered anonymous online survey, measuring expressed preferences, recruiting February to September 2020. Participants were randomised to one of three framing statements regarding MH versus PH data. PARTICIPANTS: Open to all UK residents. Participants numbered 29 275; 40% had experienced an MH condition. RESULTS: Most (76%) supported identifiable data sharing for direct clinical care without explicit consent, but 20% opposed this. Preference for clinical/identifiable sharing decreased with geographical distance and was slightly less for MH than PH data, with small framing effects. Preference for research/de-identified data sharing without explicit consent showed the same small PH/MH and framing effects, plus greater preference for sharing structured data than de-identified free text. There was net support for research sharing to the NHS, academic institutions, and national research charities, net ambivalence about sharing to profit-making companies researching treatments, and net opposition to sharing to other companies (similar to sharing publicly). De-identified linkage to non-health data was generally supported, except to data held by private companies. We report demographic influences on preference. A majority (89%) supported a single NHS mechanism to choose uses of their data. Support for data sharing increased during COVID-19. CONCLUSIONS: Support for healthcare data sharing for direct care without explicit consent is broad but not universal. There is net support for the sharing of de-identified data for research to the NHS, academia, and the charitable sector, but not the commercial sector. A single national NHS-hosted system for patients to control the use of their NHS data for clinical purposes and for research would have broad support. TRIAL REGISTRATION NUMBER: ISRCTN37444142.

Maternal outcomes and risk factors for COVID-19 severity among pregnant women.

Pregnant women may be at higher risk of severe complications associated with the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), which may lead to obstetrical complications. We performed a case control study comparing pregnant women with severe coronavirus disease 19 (cases) to pregnant women with a milder form (controls) enrolled in the COVI-Preg international registry cohort between March 24 and July 26, 2020. Risk factors for severity, obstetrical and immediate neonatal outcomes were assessed. A total of 926 pregnant women with a positive test for SARS-CoV-2 were included, among which 92 (9.9%) presented with severe COVID-19 disease. Risk factors for severe maternal outcomes were pulmonary comorbidities [aOR 4.3, 95% CI 1.9-9.5], hypertensive disorders [aOR 2.7, 95% CI 1.0-7.0] and diabetes [aOR2.2, 95% CI 1.1-4.5]. Pregnant women with severe maternal outcomes were at higher risk of caesarean section [70.7% (n = 53/75)], preterm delivery [62.7% (n = 32/51)] and newborns requiring admission to the neonatal intensive care unit [41.3% (n = 31/75)]. In this study, several risk factors for developing severe complications of SARS-CoV-2 infection among pregnant women were identified including pulmonary comorbidities, hypertensive disorders and diabetes. Obstetrical and neonatal outcomes appear to be influenced by the severity of maternal disease.

Health-related quality of life and quality of care in pregnant and postnatal women during the coronavirus disease 2019 pandemic: A cohort study.

OBJECTIVE: Health-related quality of life (HRQoL) and the delivery of high-quality care are ongoing concerns when caring for pregnant women during the coronavirus disease 2019 (COVID-19) pandemic. We compared self-reported HRQoL and hospital quality of care among perinatal women with and without COVID-19. METHODS: This is a prospective cohort study of perinatal women attending a tertiary maternity unit during the pandemic. Eighteen women who tested positive for severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) and 20 SARS-CoV-2-negative women were recruited. Participants completed the Short Form Health Survey (SF-12), Clinical Outcomes in Routine Evaluation-Outcome Measure, and Quality from the Patient's Perspective questionnaires. Mean scores were compared. RESULTS: Of the Non-COVID-19 cohort, 95% (n = 19) were Caucasian, whereas 67% (n = 12) of the COVID-19 cohort were not Caucasian (χ2  = 16.01, P < 0.001). The mean SF-12 for physical health in the COVID-19 cohort had significantly lower scores (P < 0.002). There was no difference in mental health and well-being between cohorts. The quality of care experienced was notably similar and very positive. CONCLUSION: There was a significantly greater burden on physical health among pregnant women with COVID-19. Mental health and psychological status were similar in both groups. High quality of care during a pandemic is possible to deliver in a maternity setting, irrespective of COVID-19 status.