Publishing and Paternalism in the Grenfell Mission: Wilfred Grenfell’s Accounts of a Boy Patient and Doctor-Patient Relations in Northern Newfoundland and Labrador, 1900–14

In 1906 Dr. Wilfred Grenfell, founder and head of the Grenfell medical mission of northern Newfoundland and southeastern Labrador, published a short article in Putnam’s Monthly about a nine-year-old boy named Clem Richards, who had shot himself in the knee while hunting seabirds. The boy’s identity was disclosed in full, with Grenfell including his name and image as well as a detailed description of his living conditions. The “story” of the boy’s injury and recovery became a favourite of Grenfell’s, and it was modified and republished in a number of magazines and books between 1906 and 1923. This article explores the appeal that Richards’ accident held for Grenfell and argues that his dramatic mid-winter rescue of the boy helped Grenfell promote his mission and construct a public image of himself that would appeal to American readers and donors. By comparing published accounts with Richards’ medical case record, however, we also see how much Grenfell distorted the incident to heighten its drama and reader appeal. The article also considers how the mission’s dominance over northern Newfoundland and southeastern Labrador enabled Grenfell to use Richards’ name and image for mission publicity with no consideration of patient consent.

Protocol for a prospective, hospital-based registry of pregnant women with SARS-CoV-2 infection in India: PregCovid Registry study

Introduction: Pregnant women are at increased risk of contracting coronavirus disease 2019 (COVID-19) due to several factors and therefore require special attention. However, consequences of the COVID-19 pandemic on pregnant women and their newborns remain uncharted. The aim of PregCovid registry is to document the impact of SARS-CoV-2 infection on pregnant, post-partum women and their new-borns. The aim of the registry is also to determine mother to child transmission of SARS-CoV-2 infection in India. Methods and analysis: PregCovid is a hospital based registry for capturing information of pregnant, post-partum women with COVID-19 and their new-borns in India. Medical case records of pregnant and post-partum women with laboratory confirmed diagnosis of COVID-19 will be captured in real time using an online electronic patient record (EPR) software. The frequency of each symptom will be calculated. The laboratory data will be analyzed for calculating the frequency of laboratory parameters consistently higher in women with COVID-19. The adverse pregnancy and neonatal outcomes will be analyzed and their frequency will be calculated. Response to treatment will be analyzed for frequency calculation (number of women treated with different treatment regimens). The mother to child transmission data will be analyzed from the RT-PCR and/ antibody data of neonatal and maternal samples tested wherever the information is available. The registry data will be crucial for developing strategies for reducing the adverse impact of COVID-19 on pregnant women and their new-born. Ethics and dissemination: The study is approved by the Institutional Ethics Committee of ICMR-National Institute for Research in Reproductive Health (#55/2020), BYL Nair Hospital, Mumbai, India (# 63/2020); and all the 18 participating study sites under Medical Education and Drugs Department of Government of Maharashtra. The Institutional Ethics Committees granted a waiver of consent as the data is collected from the medical case records. Trial registration number: CTRI/2020/05/025423

Dementia Caregiver Experiences and Recommendations using the BESI System in the Home Setting: A Pilot Study with Descriptive Qualitative Design (Preprint)

BACKGROUND Caregiver burden associated with dementia-related agitation is one of the most common reasons a community-dwelling person living with dementia (PLWD) transitions to a care facility. The Behavioral and Environmental Sensing and Intervention (BESI) for Dementia Caregiver Empowerment system uses sensing technology, smartwatches, tablets, and data analytics to detect and predict agitation in PLWD and to provide just-in-time notifications and dyad-specific intervention recommendations to caregivers. The BESI system has shown that there is a valid relationship between dementia-related agitation and environmental factors and that caregivers prefer a home-based monitoring system. OBJECTIVE This study aimed to obtain input from caregivers of PLWD on the value, usability, and acceptability of the BESI system in the home setting as well as their recommendations and insights for the next stage of system development. Methods. A descriptive qualitative design with thematic analysis was used to analyze ten semi-structured interviews with caregivers. A medical case study model was introduced to incorporate clinical and qualitative data and better inform the intervention recommendations piloted. METHODS A descriptive qualitative design with thematic analysis was used to analyze ten semi-structured interviews with caregivers. A medical case study model was introduced to incorporate clinical and qualitative data and better inform the intervention recommendations piloted. RESULTS Post-deployment caregiver feedback about the BESI system and the overall experience was generally positive. Caregivers acknowledged the acceptability of the system by noting ease of use and saw the system as a fit for them. Functionality issues such as timeliness in agitation notification and simplicity in the selection of agitation descriptors on the tablet interface were identified. Caregivers indicated a desire for more word options to describe agitation behaviors. Caregivers reported mild to moderate burden with caring for their PLWD but did not report significant distress. Agitation intervention suggestions were positively received in the caregiver interviews. Case study analyses showed that the intervention suggestions were well received and the decreased number of agitations helped confirm that BESI has good value and acceptability. The categories of ‘caregiver needs’ and ‘interpersonal communication’ were both received equally positively. Agitation scores, caregiver distress, caregiver depression, and stage of dementia in the PLWD were judged pertinent. Thematic analysis suggested a cascade of subjective experiences and yielded the themes of Usefulness and Helpfulness. CONCLUSIONS Caregiver acceptance of this developing technology was consistently demonstrated by tolerance, commitment to its use, and in feedback received on ways to improve the system. The themes of Usefulness and Helpfulness were discerned thematically and support the use of caregiver knowledge and experience to inform further development of the technology. The case study method provided helpful insights for the research team in determining associations between clinical data, sensor data, and the just-in-time notifications and intervention recommendations.

More than a "touch of the flu": a response to Mayrhuber et al's ""with fever it's the real flu I would say": laypersons' perception of common cold and influenza and their differences - a qualitative study in Austria, Belgium and Croatia"

This short reply contests two assumptions made by the authors of Mayrhuber et al's. "With fever it's the real flu I would say." The first is that there is influenza can be reliably defined by a medical case definition. The second is that this small qualitative study can be generalisable. However, it does underline the important point that technical diagnostic terms may be used on different registers by a variety of actors in the medical setting.

More than a "touch of the flu": a response to Mayrhuber et al's ""with fever it's the real flu I would say": laypersons' perception of common cold and influenza and their differences - a qualitative study in Austria, Belgium and Croatia"

This short reply contests two assumptions made by the authors of Mayrhuber et al's. "With fever it's the real flu I would say." The first is that there is influenza can be reliably defined by a medical case definition. The second is that this small qualitative study can be generalisable. However, it does underline the important point that technical diagnostic terms may be used on different registers by a variety of actors in the medical setting.

More than a "touch of the flu": a response to Mayrhuber et al's ""with fever it's the real flu I would say": laypersons' perception of common cold and influenza and their differences - a qualitative study in Austria, Belgium and Croatia"

This short reply contests two assumptions made by the authors of Mayrhuber et al's. "With fever it's the real flu I would say." The first is that there is influenza can be reliably defined by a medical case definition. The second is that this small qualitative study can be generalisable. However, it does underline the important point that technical diagnostic terms may be used on different registers by a variety of actors in the medical setting.

Measuring the Masses: Mass-Gathering Medical Case Reporting, Conceptual Modeling – The DREAM Model (Paper 5)

Introduction: Without a robust evidence base to support recommendations for first aid, health, and medical services at mass gatherings (MGs), levels of care will continue to vary. Streamlining and standardizing post-event reporting for MG medical services could improve inter-event comparability, and prospectively influence event safety and planning through the application of a research template, thereby supporting and promoting growth of the evidence base and the operational safety of this discipline. Understanding the relationships between categories of variables is key. The present paper is focused on theory building, providing an evolving conceptual model, laying the groundwork for exploring the relationships between categories of variables pertaining the health outcomes of MGs. Methods: A content analysis of 54 published post-event medical case reports, including a comparison of the features of published data models for MG health outcomes. Findings: A layered model of essential conceptual components for post-event medical reporting is presented as the Data Reporting, Evaluation, & Analysis for Mass-Gathering Medicine (DREAM) model. This model is relational and embeds data domains, organized operationally, into “inputs,” “modifiers,” “actuals,” and “outputs” and organized temporally into pre-, during, post-event, and reporting phases. Discussion: Situating the DREAM model in relation to existing models for data collection vis a vis health outcomes, the authors provide a detailed discussion on similarities and points of difference. Conclusion: Currently, data collection and analysis related to understanding health outcomes arising from MGs is not informed by robust conceptual models. This paper is part of a series of nested papers focused on the future state of post-event medical reporting.

A Descriptive Analysis for a Collaborative Work Process: A Complex Real Medical Case in the Radiological Field

Collaborative acts occur daily in every human activity. In the case of medicine, and particularly in the diagnostic decision process, these acts are very frequent and occur naturally. It is very important to properly understand how these collaborative acts are developed in order to provide tools that facilitate and support them. In this article, we describe this collaborative work process in the framework of a complex real medical case in the radiological field. Usually, complex cases require several specialists. In this work, we have analyzed the intervention of several specialists and the exchange and interaction of different reasoning strategies among specialists, while considering their temporal dimension. Two types of collaboration are presented in the case analysis (1) exchange between specialists from different specialties and (2) exchange between specialists from the same specialty. The method of analysis follows five steps: (1) Case synopsis, (2) Temporal representation of the case, (3) Analysis of the general decision in the case, (4) Analysis of the reasoning in the medical case using the different strategies, and (5) Analysis of radiological collaboration. We have presented different reasoning strategies, data, hypotheses and complementary tests from different sources in the diagnostic resolution process and we have shown that collaboration is present during the entire process. The temporality and the intervention of different specialists is shown using a graphical representation. We have focused special attention on radiological collaboration, and have shown how a radiological diagnosis is achieved. We have discussed different elements present in the collaboration process. Our study has produced meta-knowledge derived from these exchanges that is of value in the context of artificial intelligence progress, in particular for the comprehension of collaborative medical work.