'Misdiagnosed and Misunderstood': Insights into Rarer Forms of Dementia through a Stepwise Approach to Co-Constructed Research Poetry.

This study investigated co-constructed research poetry as a way to understand the lived experiences of people affected by rarer dementia and as a means to use poetry to convey those experiences to healthcare professionals. Using mixed methods, 71 people living with rarer dementia and care-partners (stakeholders) contributed to co-constructing 27 poems with professional poets; stakeholders' verbatim words were analysed with descriptive qualitative analysis. Stakeholders were also surveyed and interviewed about their participation. Healthcare professionals (n = 93) were surveyed to elicit their responses to learning through poetry and its acceptability as a learning tool. Poems conveyed a shared narrative of different aspects of lived experience, often owing to atypical symptoms, misunderstandings by professionals, lack of support pathways, and a continuous struggle to adapt. Stakeholder surveys indicated it was a valuable experience to both co-create and respond to the poems, whilst group interviews revealed people's experiences of the research poetry were characterised by reflection on lived experience, curiosity and exploration. Healthcare professionals' responses reinforced poetry's capacity to stimulate cognitive and affective learning specific to rare dementia support and prompt both empathy and critical thinking in practice. As the largest poetry-based study that we are aware of, this novel accessible approach of creating group poems yielded substantial information about the experiences and needs of those affected by rarer dementia and how poetry can contribute to healthcare education and training.

Urban rats are the 'fall-guy': Resident motivations for municipal rat complaints.

Rats are an important issue in cities globally. Despite their ubiquity, perceptions and concerns about rats vary with circumstance and the context in which a person interacts with them. Municipal rat management programs are a service to communities and therefore must be responsive to the varied concerns of their residents. Understanding why communities are concerned about rats can help inform rat management programs to meet the specific needs of their residents. The objective of this study was to identify why the residents of Vancouver, Canada care about rats and what they want done to address them. To do this, we qualitatively analyzed 6,158 resident complaints about rats made to the city's municipal government between January 2014 and May 2020. Using a qualitative descriptive coding process, we found that rats were a priority in a minority of cases. In general, people were more concerned about broader community issues, such as neighborhood disorder, of which rats were one part. Complaints tended to be made when problems were highly visible, nearby, and when the complainant wanted the city to take action to alleviate this issue, particularly when they were in and around their living spaces. The rates of complaints were highest in the most economically and socially deprived neighborhoods and lowest in the most privileged neighbourhoods. We synthesize this information with a view towards understanding how to develop objectives and actions for municipal management strategies that are grounded in community concerns.

Clerkship director confidence in medical student career advising in obstetrics and gynecology.

BACKGROUND: Given the increasing complexities of the residency application processes, there is an ever-increasing need for faculty to serve in the role of fourth-year medical student career advisors. OBJECTIVE: This study aimed to investigate obstetrics and gynecology clerkship directors' confidence and fulfillment with serving in the role of faculty career advisors. STUDY DESIGN: A 25-item electronic survey was developed and distributed to the 225 US obstetrics and gynecology clerkship directors in university-based and community-based medical schools with active memberships in the Association of Professors of Gynecology and Obstetrics. Items queried respondents on demographics, confidence in fourth-year advising, satisfaction with this aspect of their career, and resources used for advising. RESULTS: Of 225 clerkship directors, 143 (63.6%) responded to the survey. Nearly all clerkship directors (136/143 [95%]) reported advising fourth-year students. A median of 5.0 hours (interquartile range, 3.0-10.0) was spent per student in this advisory role, with 29 of 141 clerkship directors (20.5%) reporting some form of compensation for advising. Confidence in the ability to advise fourth-year medical students correlated significantly with number of years as a faculty, number of years as a clerkship director, and a higher full-time equivalent allotted as clerkship director. Fulfillment as a faculty career advisor was correlated with number of years as a clerkship director and a higher number of students advised. CONCLUSION: Obstetrics and gynecology clerkship directors regularly serve in the crucial role of faculty career advisor. Confidence in advising fourth-year students, advising fulfillment, and satisfaction with advising resources were all significantly correlated. We recommend that clerkship directors review resources available for advising and that they be provided academic time to serve as career advisors.

Enhancing interprofessional collaboration and interprofessional education in women's health.

This article is from the 'To The Point' series from the Association of Professors of Gynecology and Obstetrics Undergraduate Medical Education Committee. The purpose of this review is to provide an understanding of the differing yet complementary nature of interprofessional collaboration and interprofessional education as well as their importance to the specialty of Obstetrics and Gynecology. We provide a historical perspective of how interprofessional collaboration and interprofessional education have become key aspects of clinical and educational programs, enhancing both patient care and learner development. Opportunities to incorporate interprofessional education within women's health educational programs across organizations are suggested. This is a resource for medical educators, learners, and practicing clinicians from any field of medicine or any health-care profession.

Co-creating an Art Exhibition on Living Well With Dementia.

This article considers ethical questions raised during development of an online art exhibit for and with people with dementia and their care partners. This article also describes a participant engagement process emphasizing patient autonomy as a means of dismantling stigma, promoting personhood, and stimulating community engagement. This co-creative project suggests the potential for patients' art to spark attitude change and promote reciprocal, regenerative care practices.

Integration of health systems science and women's healthcare.

Health systems science addresses the complex interactions in healthcare delivery. At its core, health systems science describes the intricate details required to provide high-quality care to individual patients by assisting them in navigating the multifaceted and often complicated US healthcare delivery system. With advances in technology, informatics, and communication, the modern physician is required to have a strong working knowledge of health systems science to provide effective, low-cost, high-quality care to patients. Medical educators are poised to introduce health systems science concepts alongside the basic science and clinical science courses already being taught in medical school. Because of the common overlap of women's healthcare subject matter with health systems science topics, such as interprofessional collaboration, ethics, advocacy, and quality improvement, women's health medical educators are at the forefront of incorporating health systems science into the current medical school educational model. Here, the authors have described the concept of health systems science and discussed both why and how it should be integrated into the undergraduate medical education curriculum. Medical educators must develop physicians of the future who can not only provide excellent patient care but also actively participate in the advancement and improvement of the healthcare delivery system.

Research-based Theatre about veterans transitioning home: A mixed-methods evaluation of audience impacts.

RATIONALE: Contact!Unload, a research-based theatre production, portrays veterans experiencing mental health challenges and overcoming them through therapeutic enactment. It was performed eight times by veteran performers in 2017 for audiences in two Canadian cities comprised of civilians and military-connected personnel and their families (n = 525). METHODS: Drawing upon qualitative and quantitative data sources, this paper evaluates the immediate and longer-term impacts of Contact!Unload as a knowledge translation intervention for audience members. RESULTS: Our findings suggest that the performance: 1) improved knowledge of mental health concerns and symptoms that some veterans experience when transitioning to civilian life, 2) increased knowledge of the need for mental health supports and care for veterans, 3) sustained impacts on awareness and knowledge six months after the play and 4) sparked dialogue and actions after the show for some audience members. Moreover, theatre was seen as a powerful medium to engage audience members both cognitively and affectively in the topic. CONCLUSIONS: Research-based theatre has significant potential as a knowledge translation intervention for mental health topics. The work also points to the untapped potential of using RbT to engage audience members in a mental health literacy intervention. Future work is needed to study how to effectively combine research-based theatre with intervention design frameworks and other mental health literacy interventions.

Dyspareunia in Their Own Words: A Qualitative Description of Endometriosis-Associated Sexual Pain.

INTRODUCTION: Dyspareunia has been called the neglected symptom of endometriosis and is underexplored in clinical and research contexts. Understanding the physical experience and patient-important aspects of endometriosis-associated sexual pain can help advance valid measurement of this symptom. AIMS: The goal of this research was to characterize the physical experience of endometriosis-associated dyspareunia in the words of people affected by this condition. METHODS: This was a qualitative descriptive study that included participants with current or previous endometriosis-associated dyspareunia recruited from a data registry. Data collection involved semistructured interviews that began with an open-ended question about dyspareunia followed by prompts related to the nature of sexual pain. MAIN OUTCOME MEASURES: Interviews transcripts were subjected to qualitative content analysis using a priori (pain site, onset, character, radiation, associations, time course, and exacerbating/relieving factors) and emergent themes. RESULTS: A total of 17 participants completed interviews. Mean participant age was 33.3 years and most were identified as white, college-educated, heterosexual, and partnered. Location, onset, and character were important; interrelated features of endometriosis-associated dyspareunia were: (i) introital pain began with initial penetration and had pulling, burning, and stinging qualities and (ii) pelvic pain was experienced with deep penetration or in certain positions and was described as sharp, stabbing, and cramping. Dyspareunia ranged from mild to severe, had a marked psychosocial impact for some participants, and was managed using a variety of treatments and strategies. CONCLUSION: The endometriosis-associated dyspareunia experienced by participants was heterogenous in presentation, severity, and impact. Our findings have implications for the development of valid patient-reported outcome measures of this symptom. Wahl KJ, Imtiaz S, Lisonek M, et al. Dyspareunia in Their Own Words: A Qualitative Description of Endometriosis-Associated Sexual Pain. Sex Med 2021;9:100274.

Medical Education and Safety as Co-priorities in the Coronavirus Disease 2019 (COVID-19) Era: We Can Do Both.

As hospitals and medical schools confronted coronavirus disease 2019 (COVID-19), medical students were essentially restricted from all clinical work in an effort to prioritize their safety and the safety of others. One downstream effect of this decision was that students were designated as nonessential, in contrast to other members of health care teams. As we acclimate to our new clinical environment and medical students return to the frontlines of health care, we advocate for medical students to be reconsidered as physicians-in-training who bring valuable skills to patient care and to maintain their status as valued team members despite surges in COVID-19 or future pandemics. In addition to the contributions students provide to medical teams, they also serve to benefit from the formative experiences of caring for patients during a pandemic rather than being relegated to the sidelines. In this commentary, we discuss factors that led to students' being excluded from this pandemic despite being required at the bedside during prior U.S. public health crises this past century, and we review educational principles that support maintaining students in clinical environments during this and future pandemics.

A Proposed Shared Vision for Leadership Development for all Medical Students: A Call from a Coalition of Diverse Medical Schools.

Issue: Despite clear relevance, need, descriptive literature, and student interest, few schools offer required curriculum to develop leadership skills. This paper outlines a proposed shared vision for leadership development drawn from a coalition of diverse medical schools. We advocate that leadership development is about self (looking inward), teams (not hierarchy), and change (looking outward). We propose that leadership development is for all medical students, not for a subset, and we believe that leadership curricula and programs must be experiential and applied. Evidence: This paper also draws on the current literature and the experience of medical schools participating in the American Medical Association's (AMA) Accelerating Change in Medical Education Consortium, confronts the common arguments against leadership training in medical education, and provides three cross-cutting principles that we believe must each be incorporated in all medical student-centered leadership development programs as they emerge and evolve at medical schools. Implications: By confronting common arguments against leadership training and providing a framework for such training, we give medical educators important tools and insights into developing leadership training for all students at their institutions.

Evolving roles of clerkship directors: have expectations changed?

BACKGROUND: Physician educators directing medical student programs face increasingly more complex challenges to ensure students receive appropriate preparation to care for patients. The Alliance for Clinical Education (ACE) defined expectations of and for clerkship directors in 2003. Since then, much has changed in medical education and health care. METHODS: ACE conducted a panel discussion at the 2016 Association of American Medical Colleges Learn Serve Lead conference, soliciting input on these expectations and the changing roles of clerkship directors. Using workshops as a cross-sectional study design, participants reacted to roles and responsibilities of clerkship directors identified in the literature using an audience response system and completing worksheets. RESULTS: The participants represented different disciplines of medicine and ranged from clerkship directors to deans of curriculum. Essential clerkship director qualifications identified by participants included: enthusiasm, experience teaching, and clinical expertise. Essential tasks included grading and assessment and attention to accreditation standards. Participants felt clerkship directors need adequate resources, including budget oversight, full-time clerkship support, and dedicated time to be the clerkship director. To whom clerkship directors report was mixed. Clerkship directors look to their chair for career advice, and they also report to the dean to ensure educational standards are being met. Expectations to meet accreditation standards and provide exemplary educational experiences can be difficult to achieve if clerkship directors' time and resources are limited. CONCLUSIONS: Participant responses indicated the need for a strong partnership between department chairs and the dean's office so that clerkship directors can fulfill their responsibilities. Our results indicate a need to ensure clerkship directors have the time and resources necessary to manage clinical medical student education in an increasingly complex health care environment. Further studies need to be conducted to obtain more precise data on the true amount of time they are given to do that role.

Epistemic Strategies in Ethical Review: REB Members' Experiences of Assessing Probable Impacts of Research for Human Subjects.

Research ethics boards (REBs) are charged with applying ethical standards to protect the rights and interests of research subjects. Little, however, is known about how REB members perceive probable impacts of research participation for subjects. Drawing on in-depth interviews with 40 Canadian REB members, we identify three frequently reported epistemic strategies, including reliance on a local REB culture or ethos, use of resident authorities, and protective imagination. Far less commonly described strategies included direct or indirect contact with research subjects. REB members also reflected upon significant gaps in their knowledge and thus the importance of knowing what we don't know. Recommendations arising from this support an evidence-based practice for ethics review involving clear epistemic standards for REBs learning about subjects' experiences.

Using Interactive Learning Modules to Teach Value-Based Health Care to Health Professions Trainees Across the United States.

PROBLEM: Despite prominent calls to incorporate value-based health care (VBHC) into medical education, there is still a global need for robust programs to teach VBHC concepts throughout health professions training. APPROACH: In June 2017, Dell Medical School released the first collection (three modules) of a set of free interactive online learning modules, which aim to teach the basic foundations of VBHC to health professions learners at any stage of training and can be incorporated across diverse educational settings. These modules were designed by an interprofessional team based on principles of cognitive engagement for active learning. OUTCOMES: From June 2017 to September 2018, the website received 130,098 pageviews from 8,546 unique users (2,072 registered users), representing 45 states in the United States and 10 foreign countries. As of October 15, 2018, 568 (27%) of registered users completed modules 1-3. Five-hundred thirty-five of these users completed a survey (94% response rate). Nearly all (484/535; 90%) reported overall satisfaction with the curriculum, 522/535 (98%) agreed "after completing the modules, I can define value in health care," and 520/535 (97%) agreed "after completing the modules, I can provide examples of low- and high-value care." Second-year Dell Medical School students reported that they have incorporated value into their clinical clerkships (e.g., by discussing VBHC with peers [43/45; 96%]) as a result of completing the modules. NEXT STEPS: Future plans for the curriculum include the release of additional modules, more robust knowledge assessment, and an expanded learning platform that allows for further community engagement.

"They're always there": resident experiences of living with rats in a disadvantaged urban neighbourhood.

BACKGROUND: The presence of urban rats in the neighbourhood environment may negatively impact the physical and mental health of residents. Our study sought to describe the experiences with, perceptions of, and feelings towards rats and rat control efforts among a group of disadvantaged urban residents in Vancouver, Canada. METHODS: Semi-structured interviews were held with 20 members of the Vancouver Area Network of Drug Users (VANDU) recruited by VANDU staff. Interviews were audio recorded, transcribed, and analyzed using thematic analysis. RESULTS: Participants reported daily sightings of rats and close contact during encounters. Participants generally disliked encountering rats, raising issues of health and safety for themselves and the community due to the belief that rats carry disease. Fear of rats was common, and in some cases resulted in avoidance of rats. Effects of rats on participants were particularly pronounced for those living with rats in the home or for homeless participants who described impacts on sleep due to the sounds made by rats. Although rats were viewed as more problematic in their neighbourhood than elsewhere in Vancouver, participants believed there to be a lack of neighbourhood-level control initiatives that angered and disheartened participants. In combination with other community-level concerns (e.g., housing quality and availability), the presence of rats was viewed by some to align with a general disregard for the community and its residents. CONCLUSIONS: This study suggests that the presence of rats in urban centres may have several consequences on the physical and mental health of residents living in close contact with them. These effects may be exacerbated with continued contact with rats and when residents perceive a lack of initiative to control rats in their neighbourhood. As such, research and policies aimed at mitigating the health risks posed by rats should extend beyond disease-related risk and incorporate diverse health outcomes.

How patients with gout become engaged in disease management: a constructivist grounded theory study.

BACKGROUND: Prior qualitative research on gout has focused primarily on barriers to disease management. Our objective was to use patients' perspectives to construct an explanatory framework to understand how patients become engaged in the management of their gout. METHODS: We recruited a sample of individuals with gout who were participating in a proof-of-concept study of an eHealth-supported collaborative care model for gout involving rheumatology, pharmacy, and dietetics. Semistructured interviews were used. We analyzed transcripts using principles of constructivist grounded theory involving initial coding, focused coding and categorizing, and theoretical coding. RESULTS: Twelve participants with gout (ten males, two females; mean age, 66.5 ± 13.3 years) were interviewed. The analysis resulted in the construction of three themes as well as a framework describing the dynamically linked themes on (1) processing the diagnosis and management of gout, (2) supporting management of gout, and (3) interfering with management of gout. In this framework, patients with gout transition between each theme in the process of becoming engaged in the management of their gout and may represent potential opportunities for healthcare intervention. CONCLUSIONS: Findings derived from this study show that becoming engaged in gout management is a dynamic process whereby patients with gout experience factors that interfere with gout management, process their disease and its management, and develop the practical and perceptual skills necessary to manage their gout. By understanding this process, healthcare providers can identify points to adapt care delivery and thereby improve health outcomes.

The Revolution in Medical Education.

Medical education has been gradually evolving for hundreds of years, but educators are now seeking to identify ways to prepare students for the future of health care delivery. Medical education reform today focuses on creating entirely new models and is moving away from the traditional, post-Flexnerian organization of the medical school curriculum. Content is now being integrated thematically and presented along interdisciplinary lines with an interdigitation of basic and clinical sciences across all four years. Current trends indicate education should contain elements that produce a physician who is able to improve the quality of health care by taking a humanistic approach to medicine, thinks critically, and participates effectively in multidisciplinary and team approaches to patient care. Ultimately, medical education innovation should recognize the development of a physician is a lifetime process and will approach the formation of physicians from a new paradigm to better serve the educator and prepare the learner for the medical practice of tomorrow.

Ethics is for human subjects too: participant perspectives on responsibility in health research.

Despite the significant literature as well as energy devoted to ethical review of research involving human subjects, little attention has been given to understanding the experiences of those who volunteer as human subjects. Why and how do they decide to participate in research? Is research participation viewed as a form of social responsibility or as a way of obtaining individual benefits? What if anything do research subjects feel they are owed for participation? And what do they feel that they owe the researcher? Drawing on in-depth individual interviews conducted in 2006 and 2007 with 41 subjects who participated in a variety of types of health research in Canada, this paper focuses on subject perspectives on responsibility in research. Highlighting the range of ways that subjects describe their involvement in research and commitments to being a 'good' subject, we present a typology of narratives that sheds new light on the diverse meanings of research participation. These narratives are not mutually exclusive or prescriptive but are presented as ideal types typifying a set of circumstances and values. As such, they collectively illuminate a range of motivations expressed by human subjects as well as potential sources of vulnerability. The typology adds a new dimension to the literature in this area and has significant implications for researchers seeking more human-subject centred approaches to research recruitment and retention, as well as research ethics boards trying to better anticipate the perspectives of prospective participants.

Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada.

BACKGROUND: Although there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature on motivations to participate in health research. This paper contributes to more recent qualitative approaches to understanding how and why people come to participate in various types of health research. We focus on the experience of participating and the meanings research participation has for people within the context of their lives and their health and illness biographies. METHODS: This is a qualitative exploratory study informed by grounded theory strategies. Thirty-nine participants recruited in British Columbia and Manitoba, Canada, who had taken part in a diverse range of health research studies participated in semi-structured interviews. Participants described their experiences of health research participation including motivations for volunteering. Interviews were recorded, transcribed, and analyzed using constant comparisons. Coding and data management was supported by Nvivo-7. RESULTS: A predominant theme to emerge was 'participation in health research to access health services.' Participants described research as ways of accessing: (1) Medications that offered (hope of) relief; (2) better care; (3) technologies for monitoring health or illness. Participants perceived standard medical care to be a "trial and error" process akin to research, which further blurred the boundaries between research and treatment. CONCLUSIONS: Our findings have implications for recruitment, informed consent, and the dichotomizing of medical/health procedures as either research or treatment. Those with low health status may be more vulnerable to potential coercion, suggesting the need for a more cautious approach to obtaining consent. Our findings also indicate the need for boundary work in order to better differentiate treatment and research. It is important however to acknowledge a categorical ambiguity; it is not always the case that people are misinformed about the possible benefits of research procedures (i.e., therapeutic misconception); our participants were aware that the primary purpose of research is to gain new knowledge yet they also identified a range of actual health benefits arising from their participation.

A university system's approach to enhancing the educational mission of health science schools and institutions: the University of Texas Academy of Health Science Education.

BACKGROUND: The academy movement developed in the United States as an important approach to enhance the educational mission and facilitate the recognition and work of educators at medical schools and health science institutions. OBJECTIVES: Academies initially formed at individual medical schools. Educators and leaders in The University of Texas System (the UT System, UTS) recognized the academy movement as a means both to address special challenges and pursue opportunities for advancing the educational mission of academic health sciences institutions. METHODS: The UTS academy process was started by the appointment of a Chancellor's Health Fellow for Education in 2004. Subsequently, the University of Texas Academy of Health Science Education (UTAHSE) was formed by bringing together esteemed faculty educators from the six UTS health science institutions. RESULTS: Currently, the UTAHSE has 132 voting members who were selected through a rigorous, system-wide peer review and who represent multiple professional backgrounds and all six campuses. With support from the UTS, the UTAHSE has developed and sustained an annual Innovations in Health Science Education conference, a small grants program and an Innovations in Health Science Education Award, among other UTS health science educational activities. The UTAHSE represents one university system's innovative approach to enhancing its educational mission through multi- and interdisciplinary as well as inter-institutional collaboration. CONCLUSIONS: The UTAHSE is presented as a model for the development of other consortia-type academies that could involve several components of a university system or coalitions of several institutions.

Communications between volunteers and health researchers during recruitment and informed consent: qualitative content analysis of email interactions.

BACKGROUND: While use of the Internet is increasingly widespread in research, little is known about the role of routine electronic mail (email) correspondence during recruitment and early volunteer-researcher interactions. To gain insight into the standpoint of volunteers we analyzed email communications in an early rheumatoid arthritis qualitative interview study. OBJECTIVES: The objectives of our study were (1) to understand the perspectives and motivations of individuals who volunteered for an interview study about the experiences of early rheumatoid arthritis, and (2) to investigate the role of emails in volunteer-researcher interactions during recruitment. METHODS: Between December 2007 and December 2008 we recruited 38 individuals with early rheumatoid arthritis through rheumatologist and family physician offices, arthritis Internet sites, and the Arthritis Research Centre of Canada for a (face-to-face) qualitative interview study. Interested individuals were invited to contact us via email or telephone. In this paper, we report on email communications from 12 of 29 volunteers who used email as their primary communication mode. RESULTS: Emails offered insights into the perspective of study volunteers. They provided evidence prospectively about recruitment and informed consent in the context of early rheumatoid arthritis. First, some individuals anticipated that participating would have mutual benefits, for themselves and the research, suggesting a reciprocal quality to volunteering. Second, volunteering for the study was strongly motivated by a need to access health services and was both a help-seeking and self-managing strategy. Third, volunteers expressed ambivalence around participation, such as how far participating would benefit them, versus more general benefits for research. Fourth, practical difficulties of negotiating symptom impact, medical appointments, and research tasks were revealed. We also reflect on how emails documented volunteer-researcher interactions, illustrating typically undocumented researcher work during recruitment. CONCLUSIONS: Emails can be key forms of data. They provide richly contextual prospective records of an underresearched dimension of the research process: routine volunteer-researcher interactions during recruitment. Emails record the context of volunteering, and the motivations and priorities of volunteers. They also highlight the "invisible work" of research workers during what are typically considered to be standard administrative tasks. Further research is needed to fully understand the role of routine emails, what they may reveal about volunteers' decisions to participate, and their implications for research relationships-for example, whether they have the potential to foster rapport, trust, and understanding between volunteer and researcher, and ultimately shift the power dynamic of the volunteer-researcher relationship.