Patient consent preferences on sharing personal health information during the COVID-19 pandemic: "the more informed we are, the more likely we are to help".

BACKGROUND: Rapid ethical access to personal health information (PHI) to support research is extremely important during pandemics, yet little is known regarding patient preferences for consent during such crises. This follow-up study sought to ascertain whether there were differences in consent preferences between pre-pandemic times compared to during Wave 1 of the COVID-19 global pandemic, and to better understand the reasons behind these preferences. METHODS: A total of 183 patients in the pandemic cohort completed the survey via email, and responses were compared to the distinct pre-pandemic cohort (n = 222); all were patients of a large Canadian cancer center. The survey covered (a) broad versus study-specific consent; (b) opt-in versus opt-out contact approach; (c) levels of comfort sharing with different recipients; (d) perceptions of commercialization; and (e) options to track use of information and be notified of results. Four focus groups (n = 12) were subsequently conducted to elucidate reasons motivating dominant preferences. RESULTS: Patients in the pandemic cohort were significantly more comfortable with sharing all information and biological samples (90% vs. 79%, p = 0.009), sharing information with the health care institution (97% vs. 83%, p < 0.001), sharing information with researchers at other hospitals (85% vs. 70%, p < 0.001), sharing PHI provincially (69% vs. 53%, p < 0.002), nationally (65% vs. 53%, p = 0.022) and internationally (48% vs. 39%, p = 0.024) compared to the pre-pandemic cohort. Discomfort with sharing information with commercial companies remained unchanged between the two cohorts (50% vs. 51% uncomfortable, p = 0.58). Significantly more pandemic cohort patients expressed a wish to track use of PHI (75% vs. 61%, p = 0.007), and to be notified of results (83% vs. 70%, p = 0.012). Thematic analysis uncovered that transparency was strongly desired on outside PHI use, particularly when commercialization was involved. CONCLUSIONS: In pandemic times, patients were more comfortable sharing information with all parties, except with commercial entities, where levels of discomfort (~ 50%) remained unchanged. Focus groups identified that the ability to track and receive results of studies using one's PHI is an important way to reduce discomfort and increase trust. These findings meaningfully inform wider discussions on the use of personal health information for research during global crises.

Invigorating diabetes care in a post-pandemic arena

Diabetes services have undergone significant changes during the pandemic. Anne Phillips highlights the opportunities this provides for improving care for people living with diabetes

Diabetes care: a time to review prescribing approaches and reach out to local communities

Diabetes care has undergone a rapid change in delivery since the first lockdown from COVID-19 in March 2020. As such, services have had to reshape and transform into virtual diabetes reviews. Vulnerable communities with high diabetes incidence or risk have experienced health disparities, not least because of COVID-19, but also as a result of slower medication reviews and escalation of diabetes prescribing as required. This article critically examines the presenting inequalities in diabetes care provision in the UK. In particular focusing on the experience of minority ethnic populations, who experience inequality and health disparities, especially related to prescribing of newer medications in type 2 diabetes. Evidence from studies and reports underpins the debates presented about reconsidering diabetes care delivery and in particular listening to and working with local practices and their communities to disseminate health messages and provide person-centred educational opportunities.

Incorporating Equity through Community Engagement: Durham, NC, USA

In Aug 2018, the Durham City Council directed staff to create an Equitable Community Engagement Blueprint to guide future engagement for the Durham Belt Line Trail, a 1.7-mile trail that will connect north Durham to downtown and the East Coast Greenway once complete. The City Council issued this directive in response to concerns that residents had not been adequately informed about the project and that the project would lead to green gentrification, a process where amenities such as parks and trails lead to "increases in housing prices and the influx of new, wealthier and often white residents in low-income communities of color." Here,Phillips discusses the Blueprint.

Conversations of opportunity in diabetes care

Anne Phillips explores the ways in which diabetes consultations can be maximised to deliver the best effects for people living with diabetes and health professionals involved in their care Changes to diabetes care due to the COVID-19 pandemic have caused extra pressures for both people living with diabetes and the health professionals involved in their care. Virtual and remote consulting has caused many health professionals to experience stress and usual face-to-face conversations with people living with diabetes have changed in context, frequency and delivery. The nuances of non-verbal communication can be lost in virtual consultations, so it is vitally important that health professionals are aware of this and consider how to deliver consultation conversations to the best effect. It is imperative that every contact counts and every virtual and face-to-face consultation has meaning for the person living with diabetes to maximise the benefit for the individual and their circumstances.

Supporting people with diabetes now and in the future

Due to the COVID-19 pandemic, many changes to practice have taken place. Anne Phillips explains why it is important to stay up to date to help people with diabetes to manage their condition

Delivery system can vary ventilatory parameters across multiple patients from a single source of mechanical ventilation.

BACKGROUND: Current limitations in the supply of ventilators during the Covid19 pandemic have limited respiratory support for patients with respiratory failure. Split ventilation allows a single ventilator to be used for more than one patient but is not practicable due to requirements for matched patient settings, risks of cross-contamination, harmful interference between patients and the inability to individualize ventilator support parameters. We hypothesized that a system could be developed to circumvent these limitations. METHODS AND FINDINGS: A novel delivery system was developed to allow individualized peak inspiratory pressure settings and PEEP using a pressure regulatory valve, developed de novo, and an inline PEEP 'booster'. One-way valves, filters, monitoring ports and wye splitters were assembled in-line to complete the system and achieve the design targets. This system was then tested to see if previously described limitations could be addressed. The system was investigated in mechanical and animal trials (ultimately with a pig and sheep concurrently ventilated from the same ventilator). The system demonstrated the ability to provide ventilation across clinically relevant scenarios including circuit occlusion, unmatched physiology, and a surgical procedure, while allowing significantly different pressures to be safely delivered to each animal for individualized support. CONCLUSIONS: In settings of limited ventilator availability, systems can be developed to allow increased delivery of ventilator support to patients. This enables more rapid deployment of ventilator capacity under constraints of time, space and financial cost. These systems can be smaller, lighter, more readily stored and more rapidly deployable than ventilators. However, optimizing ventilator support for patients with individualized ventilation parameters will still be dependent upon ease of use and the availability of medical personnel.