Health data ecosystem in Pakistan: a multisectoral qualitative assessment of needs and opportunities.

OBJECTIVE: Data are essential for tracking and monitoring of progress on health-related sustainable development goals (SDGs). But the capacity to analyse subnational and granular data is limited in low and middle-income countries. Although Pakistan lags behind on achieving several health-related SDGs, its health information capacity is nascent. Through an exploratory qualitative approach, we aimed to understand the current landscape and perceptions on data in decision-making among stakeholders of the health data ecosystem in Pakistan. DESIGN: We used an exploratory qualitative study design. SETTING: This study was conducted at the Aga Khan University, Karachi, Pakistan. PARTICIPANTS: We conducted semistructured, in-depth interviews with multidisciplinary and multisectoral stakeholders from academia, hospital management, government, Non-governmental organisations and other relevant private entities till thematic saturation was achieved. Interviews were recorded and transcribed, followed by thematic analysis using NVivo. RESULTS: Thematic analysis of 15 in-depth interviews revealed three major themes: (1) institutions are collecting data but face barriers to its effective utilisation for decision-making. These include lack of collection of needs-responsive data, lack of a gender/equity in data collection efforts, inadequate digitisation, data reliability and limited analytical ability; (2) there is openness and enthusiasm for sharing data for advancing health; however, multiple barriers hinder this including appropriate regulatory frameworks, platforms for sharing data, interoperability and defined win-win scenarios; (3) there is limited capacity in the area of both human capital and infrastructure, for being able to use data to advance health, but there is appetite to improve and invest in capacity in this area. CONCLUSIONS: Our study identified key areas of focus that can contribute to orient a national health data roadmap and ecosystem in Pakistan.

Corrigendum: A Nationwide Virtual Research Education Program for Medical Students in Pakistan: Methodological Framework, Feasibility Testing, and Outcomes.

[This corrects the article DOI: 10.3389/fpubh.2021.812130.].

Non-compliance to social distancing during COVID-19 pandemic: A comparative cross-sectional study between the developed and developing countries.

BACKGROUND: Despite mass vaccination campaigns, the world has seen a steady rise in the number of SARS-CoV-2 cases, with 178,765,626 cases and 3,869,994 COVID-19 related deaths by June 19th, 2021. Therefore, it is important to enforce social distancing to control its spread. With the variation observed in the severity of the pandemic in different countries, it is also imperative to study the social distancing behaviors amongst the population in developed and developing countries. DESIGN AND METHODS: In this cross-sectional study, a total of 384 participants from 14 different countries were surveyed via an online REDCap form. RESULTS: In this study, it was highlighted that despite adequate knowledge, the overall compliance to COVID-19 related preventive measures remains poor, the lowest being in the senior age group (≥ 65 years), and the highest being in adults aged between 25-64 years (p=0.003). Population from the developing countries were more compliant to all preventative measures against COVID-19 spread, except for handwashing, where the difference between the two populations remained insignificant (p=0.038, p<0.001, p=0.016) Socioeconomic status, prior history of COVID-19 infection or presence of comorbidities did not significantly affect compliance rates, however, participants with no prior history of this infection were found to be more compliant to donning a mask in public as compared to those with a positive history (p=0.044). CONCLUSIONS: Since compliance remains subpar in both the developing and the developed countries, mass campaigns about COVID-19 related preventive measures remain essential in controlling the disease spread.

Hajdu Cheney Syndrome due to NOTCH2 defect - First case report from Pakistan and review of literature.

INTRODUCTION AND IMPORTANCE: Hajdu Cheney Syndrome (HCS) is a rare skeletal disease characterized by severe, progressive focal bone loss with osteoporosis, variable craniofacial, vertebral anomalies and distinctive facial features. It is inherited as an autosomal dominant disease although sporadic cases have been described in literature. Identifying these cases in clinical practice is important for proper diagnosis and management. CASE PRESENTATION: We report a case of a 36-year-old male patient presented at metabolic bone disease clinic at the Aga Khan University Hospital with history of multiple fragility fractures and juvenile osteoporosis since childhood. DNA sequence analysis of the NOTCH2 coding sequence revealed a pathogenic variant in NOTCH 2, Exon 34, c.6426_6427insTT (p.Glu2143Leufs*5), consistent with a NOTCH2 related conditions including HCS. CLINICAL DISCUSSION: The multitude of presentations associated with HCS are linked to the NOTCH2 gene, as Notch signaling is one of the core signaling pathways that control embryonic development. Hence, mutations in the Notch signaling pathway cause developmental phenotypes that affect various organs including the liver, skeleton, heart, eye, face, kidney, and vasculature. CONCLUSION: To the best of our knowledge, nucleotide mutations of c.6933delT, c.6854delA, c.6787C.T, and c.6424-6427delTCTG were all determined to be novel, with c.6428T > C being the most common mutation found in literature. The c.6426_6427insTT mutation our patient was found to have via gene sequencing too appears to be a novel mutation, which has not previously been reported in literature.

A Nationwide Virtual Research Education Program for Medical Students in Pakistan: Methodological Framework, Feasibility Testing, and Outcomes.

Introduction: Equipping young medical trainees with fundamental research skills can be a promising strategy to address the need for professionals who can understand and responsibly communicate evolving scientific evidence during a pandemic. Despite an ardent interest to partake in research, most educational institutions in Pakistan and other low-middle income countries have not yet adopted a comprehensive strategy for research skills education. The authors aimed to design and assess the feasibility of implementing the first nation-wide virtual research workshop for medical students in Pakistan. Methods: The course "Beginners Guide to Research," designed as a nation-wide virtual research workshop series, was conducted for medical students across Pakistan in June 2020. Four interactive live workshops took place online on alternate days from June 22nd, 2020, to June 27th, 2020, each lasting 1-2 h. Outcomes included: (i) reach, (ii) efficacy as indexed by pre-post change in score pertaining to knowledge and application of research and (iii) self-rated perceptions about understanding of research on a Likert scale. Results: 3,862 participants enrolled from 41 cities and 123 institutions. Enrolled participants belonged to the following provinces: Sindh (n = 1,852, 48.0%), Punjab (n = 1,767, 45.8%), Khyber Pakhtunkhwa (n = 109, 2.8%), Azad Jammu and Kashmir (n = 84, 2.2%) Balochistan (n = 42, 1.1%). We also saw a few registrations from international students (n = 8, 0.2%). Mean (SD) age of enrolled medical students was 21.1 (2.1) years, 2,453 (63.5%) participants were female and 2,394 (62.0%) were from private-sector medical colleges. Two thousand ninety-three participants participants filled out all four pre-test and post-test forms. The total median knowledge score improved from 39.7 to 60.3% with the highest improvements in concepts of research bioethics and literature search (p < 0.001) with greater change for females compared to males (+20.6 vs. +16.2%, p < 0.001) and private institutions compared to public ones (+16.2 vs. +22.1%, p < 0.001). Conclusion: The overwhelming enrollment and significant improvement in learning outcomes (>50% of baseline) indicate feasibility of a medical student-led research course during a pandemic, highlighting its role in catering to the research needs in the LMICs.