Collaboration and co-production with Black, Asian and minority ethnic students: working in partnership with our students to inform and deliver access and participation practice

In recent years, the topic of UK-domiciled undergraduate students from Black, Asian and minority ethnic (BAME) backgrounds not accessing, succeeding and progressing as well as their White peers in Higher Education (HE) has gained increased policy and media attention. Institutions are required to address gaps amongst student groups that are underrepresented within HE, including students from BAME backgrounds, through their Office for Students' (OfS) regulated Access and Participation Plan (APP). This paper offers specific examples of how Edge Hill University, a university in North West England, has begun to approach this work in the new regulatory environment. APPs now place an increased emphasis upon research informed practice, student engagement, consultation, and evaluation. This innovative practice article provides a detailed example of genuine collaboration and coproduction with students to develop and deliver APP work, and extends an earlier presentation delivered at the March 2021 Open University Access Participation and Success International Biennial Conference. In this article, the authors outline the development of a new Diversity Access Programme and a BAME Student Advisory Panel. The paper offers a reflective account of how APP leads, Widening Participation (WP) practitioners, evaluators and students can work together effectively in partnership to design and deliver WP initiatives.

Digital India: Opportunities and Challenges including in Context of COVID-19

Digital India is an umbrella programme that covers multiple Government Ministries and Departments. It is an effort to weave a large number of ideas and thoughts into a single, comprehensive vision so that each of them can be implemented as part of a larger goal. Digital India is to be implemented by the entire Government with overall coordination being done by the Department of Electronics and Information Technology (DeitY). It provides the much needed thrust to the nine pillars of growth areas, namely Broadband Highways, Universal Access to Mobile Connectivity, Public Internet Access Programme, eGovernance: Reforming Government through Technology, e-Kranti - Electronic Delivery of Services, Information for All, Electronics Manufacturing, IT for Jobs and Early Harvest Programmes. A number of digital health initiatives have also been rolled out under the programme, including in context of COVID-19 and pandemic response. A comprehensive real-time based IT platform ‘COVID India Portal’ has been launched in March 2020 in response to COVID -19 pandemic, for monitoring the situation, preparedness and management to control the COVID in the country.

Creative Interventions: Integrating Arts-Based Approaches in a University Access Programme

This article is based on my master’s degree study at the University of Johannesburg that evaluates the impact of utilising arts-based approaches in the Workplace Preparation (WPP) module curriculum. The study demonstrates that when integrated into teaching and learning, arts-based approaches expand the capability of the curriculum to achieve more equitable and accessible participation. I use an action research approach in the study to investigate how creativity and arts-based practices might instil experiences of empowerment and agency in students in the classroom. I draw from literature to gain multiple critical perspectives in order to frame and demonstrate arts-based approaches to teaching and learning that embrace alternative ways of knowing, communicating and interacting. The findings suggest that culturally relevant arts-based approaches play a legitimate and vital role in expanding the pedagogic space in order to foster embodied learning opportunities that acknowledge and include non-linear, somatic, visceral, emotional and symbolic dimensions. Arts-based methods advance transformative agendas and support learning in the current higher education (extended programme) context. The study involves an actionable intervention that uses arts-based methods to present the Workplace Preparation module. Arts-based activities and lesson plans are devised for integration into the existing formal programme and can be used and adapted as a resource for lecturers in the Workplace Preparation Department.

Baseline characteristics of patients with transthyretin amyloid cardiomyopathy enrolled in a tafamidis expanded access programme

Background Transthyretin amyloid cardiomyopathy (ATTR-CM) is a progressive and ultimately fatal disease caused by the accumulation of amyloid fibrils in the heart muscle. Tafamidis, currently the only approved drug for the treatment of ATTR-CM, demonstrated reduced mortality and cardiovascular-related hospitalisations in the Tafamidis in Transthyretin Cardiomyopathy Clinical Trial (ATTR-ACT). Real-world data in patients with ATTR-CM, including patient characteristics, are scarce. Here we analysed the baseline characteristics of patients enrolled in an expanded access programme (EAP) for tafamidis. Initiated in 2018, this tafamidis EAP allows access to tafamidis for patients who have exhausted all standard-of-care options and are not eligible for a clinical trial. Purpose To examine baseline characteristics of patients with ATTR-CM enrolled in a tafamidis EAP. Methods All patients enrolled in this tafamidis EAP from the start (May 2018) until November 2020 were included. To be eligible for inclusion, patients had to have documentation of the following: genetic testing for transthyretin amyloidosis (TTR sequencing); ATTR-CM diagnosis, including the criteria used; exclusion of light chain amyloidosis; and current medical/cardiac status, including New York Heart Association (NYHA) functional classification. Patients were grouped for analysis purposes in the following NYHA classes: I–II, >II–III, and >III–IV. Results A total of 700 patients (88.7% male) from 20 countries were enrolled over 2.6 years. Mean age was 76.2 years in males and 76.6 years in females. Of 518 patients with a recorded genotype, 87.5% were wild-type (89.6% male) and 12.5% hereditary (73.8% male). In males and females, respectively, mean age was 77.0 and 79.4 years in wild-type patients, and 66.2 and 69.3 years in variant patients. The NYHA class distribution is shown in the Figure. The greatest proportion of patients was considered NYHA class I–II. The proportion of patients considered NYHA class I–II was lower in the first half of the data collection period (Months 0–15, 55.3%) compared with the latter half (Months 15–30, 59.4%). In 254 patients with baseline N-terminal pro-B-type natriuretic peptide (NT-proBNP) data, the median NT-proBNP level was 2784.5 pg/mL (NYHA class I–II, 2408.5 pg/mL; NYHA class >II–III, 3165.0 pg/mL). Conclusions These are the first multi-country, real-world data evaluating baseline characteristics of patients with ATTR-CM enrolled in an EAP. It is of interest that, compared with the ATTR-ACT population, this patient group was older and had a greater proportion of wild-type patients. As a higher percentage of patients with less severe disease was enrolled in the latter half of data collection, these data also suggest a potential shift over time to earlier diagnosis of ATTR-CM. This analysis provides insight into the characteristics of real-world patients with ATTR-CM. FUNDunding Acknowledgement Type of funding sources: Private company. Main funding source(s): Pfizer Figure 1. Baseline NYHA class distribution

Zugelassene Systemtherapien in der Dermatologie

Zusammenfassung Hintergrund Für den Fachbereich Dermatologie steht gerade in den letzten Jahren ein zunehmendes Spektrum an Systemtherapien zur Verfügung. Bei einigen dieser Medikamente handelt es sich um einen Off-label-Use, was beispielsweise zu Problemen bei der Kostenerstattung führen kann. Dieser Beitrag soll daher einen Überblick über die derzeit zugelassenen Systemtherapien in der Dermatologie bieten und weitere Alternativen wie Compassionate Use und Early-Access-Programme aufzeigen. Material und Methoden Die Recherche der zugelassenen Medikamente in Deutschland wurde online in der Datenbank für Arzneimittel des Bundesinstituts für Arzneimittel und Medizinprodukte durchgeführt. Zudem erfolgte ein Abgleich mit den Angaben in der Roten Liste. Ergebnisse Für insgesamt 50 dermatologisch relevante Krankheitsbilder werden tabellarisch die jeweils zugelassenen Systemtherapien dargestellt. Diskussion Es kann festgestellt werden, dass die enormen Weiterentwicklungen der letzten Jahre und die zunehmend gute Evidenz in vielen Fällen trotz oftmals fehlender klinischer Studien im Fachbereich der Dermatologie sehr Erfolg versprechende systemische Behandlungskonzepte bieten. Jedoch kann der oft notwendige Off-label-Use Schwierigkeiten im klinischen Alltag verursachen. Der behandelnde Arzt sollte ebenso wie der Patient daher immer informiert sein, wenn es sich bei einer geplanten Therapie um einen Off-label-Use handelt. Es sollten zuvor zugelassene Alternativen in Erwägung gezogen werden, und eine adäquate Aufklärung der Patienten sollte erfolgen.