Patients as knowledge partners in the context of complex chronic conditions.

This article conveys how taking patient knowledge seriously can improve patient experience and further medical science. In clinical contexts related to infection-associated chronic conditions and other complex chronic illnesses, patient knowledge is often undervalued, even when clinicians have limited training in diagnosing and treating a particular condition. Despite growing acknowledgement of the importance of patients as 'stakeholders', clinicians and medical researchers have yet to fully develop ways to evaluate and, when appropriate, meaningfully incorporate patient knowledge-experiential, scientific, social scientific, historical or otherwise-into clinical practice and research. We argue that there are opportunities for clinicians and researchers to collaborate with patients and colleagues from the social sciences and humanities. We use two examples to demonstrate why patient knowledge should inform medical engagement with chronic and complex conditions. The first comes from a disability studies scholar who describes the social biases that can sideline patient expertise, and the second is from an anthropologist whose reading in medical humanities led to an effective treatment for her recovery. Rather than merely acknowledging 'lived experience', clinical and research teams should include patients with complex chronic conditions as 'knowledge partners'. These patients occupy unique and valuable epistemological positions, and their knowledge should be considered with as much openness and rigour as other forms of medical knowledge. As more medical schools, residency programmes and hospitals emphasise the need for 'deep listening' and patient input, we encourage meaningful engagement with patients whose insights can provide crucial knowledge for clinical and scientific advancement.

Rationale, Design and Baseline Characteristics of a Randomized Controlled Trial of a Cardiovascular Quality Improvement Strategy in India: The C-QIP Trial.

BACKGROUND: Quality of chronic care for cardiovascular disease (CVD) remains suboptimal worldwide. The Collaborative Quality ImProvement (C-QIP) trial aims to develop and test the feasibility and clinical effect of a multicomponent strategy among patients with prevalent CVD in India. METHODS: The C-QIP is a clinic-based, open randomized trial of a multicomponent intervention versus usual care that was locally developed and adapted for use in Indian settings through rigorous formative research guided by Consolidated Framework for Implementation Research (CFIR). The C-QIP intervention consisted of 5 components: 1) electronic health records and decision support system for clinicians, 2) trained non-physician health workers (NPHW), 3) text-message based lifestyle reminders, 4) patient education materials, 5) quarterly audit and feedback reports. Patients with CVD (ischemic heart disease, ischemic stroke, or heart failure) attending outpatient CVD clinics were recruited from September 2022 to September 2023 and were randomized to the intervention or usual care arm for at least 12 months follow-up. The co-primary outcomes are implementation feasibility, fidelity (i.e., dose delivered and dose received), acceptability, adoption and appropriateness, measured at multiple levels: patient, provider and clinic site-level, The secondary outcomes include prescription of guideline directed medical therapy (GDMT) (provider-level), and adherence to prescribed therapy, change in mean blood pressure (BP) and LDL-cholesterol between the intervention and control groups (patient-level). In addition, a trial-based process and economic evaluations will be performed using standard guidelines. RESULTS: We recruited 410 socio-demographically diverse patients with CVD from four hospitals in India. Mean (SD) age was 57.5 (11.7) years, and 73.0% were males. Self-reported history of hypertension (48.5%) and diabetes (41.5%) was common. At baseline, mean (SD) BP was 127.9 (18.2) /76.2 (11.6) mm Hg, mean (SD) LDLc: 80.3 (37.3) mg/dl and mean (SD) HbA1c: 6.8% (1.6%). At baseline, the GDMT varied from 62.4% for patients with ischemic heart disease, 48.6% for ischemic stroke and 36.1% for heart failure. CONCLUSION: This study will establish the feasibility of delivering contextually relevant, and evidence-based C-QIP strategy and assess whether it is acceptable to the target populations. The study results will inform a larger scale confirmatory trial of a comprehensive CVD care model in low-resource settings. TRIAL REGISTRATION: Clinical Trials Registry India: CTRI/2022/04/041847; Clinicaltrials.gov number: NCT05196659.

Framing Long Covid through Patient activism in the United States: Patient, Provider, Academic, and Policymaker Views.

In 2020, when COVID-19 patients first recognized their complex and progressive symptoms, patient activists defined "Long Covid" on social media. While patient support groups are by no means new, the predominance of online support groups and those leveraging the power of social media has become a defining characteristic of Long Covid. In this article, we argue that naming Long Covid served as a powerful conduit of legitimacy for patient activists in media, medicine, and policy. We conducted 57 in-depth qualitative interviews with patients (n = 22), clinicians (n = 20), and policy and academic experts (n = 15). We found naming was not a primary area of contention. In contrast, patients found pride and a sense of identity within the terms. Many clinicians struggled with diagnostics because Long Covid lacks clear biological tests, while patients were consistently disappointed by the lack of positive tests and clarity around their symptomatology. The heterogeneity of the Long Covid experience, as well as the diversity of symptoms, further provides opportunities for contestation and disbelief among clinicians and policymakers not only in diagnostics but also in disability rights. Thus, the power of patient activism has transformed how the condition is perceived among and between patients, clinicians, policymakers, and the media in unprecedented ways that will likely have longstanding impacts on how IACCs are viewed in medicine and the public alike.

Women´s experiences of menopause: A qualitative study among women in Soweto, South Africa.

Women today are experiencing menopause for decades more than in previous generations. This 'change of life' is defined by an entire stage of physical, hormonal, and emotional changes that accompany menstrual irregularity and the cessation of fertility, although limited medical research has focused on it. Yet, the inevitability of menopause is universal for all human females around 50 years old. In this article, we conducted twenty-five 20-60 min semi-structured qualitative interviews. Most women marked menopause by fertility cessation and social transition to old age, pushing back against a medical framework of menopause that emphasises hormonal deficiency and becoming disordered. In contrast, women frame menopause as a natural process that contributes to a critical social role transition, which they perceive as deeply private in part because it is associated with a reduction in femininity, sexuality, and power. On the other hand, menopause was also described as a liberating process through which women no longer needed to purchase pads or manage blood loss. Recognising how women may perceive menopause not as a deficit or disorder but as a social role transition that has both costs and benefits is useful for medical practitioners when discussing clinical options.

Trust, individualism, and the logics of care in middle America during the first year of the COVID-19 pandemic.

Polarization and turf-wars have characterized the COVID-19 response in the United States. While COVID-19 narratives can be binary and divisive, how people cared for each other throughout the first year of the pandemic is more nuanced. This article describes how and why constructs of fear, individualism, wellbeing, and personal risk-taking became imbued in behaviors that thwarted the risk of the collective. This work is based on informal conversations, public forums, and 86 in-depth interviews during the 2020 summer in a small tourist town in northwest Iowa. Some believed engaging in public health prevention was not their responsibility and instead privileged their personal enjoyment, finances, or mental health over others, de-emphasizing personal risk and stating God will protect them. Others were deeply committed to public health prevention, by staying home, masking, and social distancing. In both cases, people used shame to promote their views (e.g., shame on you for masking/unmasking!) as well as fear (e.g., I do/don't fear coronavirus because I am virtuous). However, most engaged in logics of care, navigating what public health precautions to follow to protect themselves and those they loved most. Yet, such decisions were navigated through a culture of individualism and ideals of personal responsibility that cultivated a mistrust in public health. Understanding how and why such individualism took hold in American publics is a crucial inflection point for policy-making as well as cultural interpretation of why and how people construct risk and responsibility.

Views on COVID-19 vaccination among residents of Eldoret, Kenya during the 2021 vaccine rollout.

The Government of Kenya initiated COVID-19 vaccination program in March 2021. However, vaccine uptake remains low, especially in rural areas in Kenya. We interviewed 40 residents of Eldoret town to explore the knowledge, beliefs, and meanings they attach towards vaccines generally, and why they chose to vaccinate or not. Two-thirds of our participants perceived themselves to be at risk of COVID-19 infections. About half demonstrated willingness to be vaccinated and about a third had been vaccinated. All participants were knowledgeable about the broader benefits of vaccination. Yet, widespread beliefs that vaccination programmes target children and pregnant women decreased vaccine acceptance. Also, we found that concerns about vaccine safety, lack of knowledge, misinformation from social media, and conspiracy theories contributed to COVID-19 vaccine hesitancy in Eldoret. Low COVID-19 vaccination rates and hesitancy - even when the vaccines are accessible and free in Kenya - cannot be ignored. The current COVID-19 vaccination prioritisation schedule (distinct from the usual structure where children, childbearing women are prioritised) and beliefs that older people are targeted to test vaccines efficacy must be addressed through improved communication and mass education. More research is needed to investigate the socio-economic, political, and historical factors that influence vaccine hesitancy in Kenya.

Flourishing with chronic illness(es) and everyday stress: Experiences from Soweto, South Africa.

The pursuit of flourishing, or living a good life, is a common human endeavor with different meanings across individuals and contexts. What is needed is a further exploration of the relationship between flourishing and health, particularly chronic illness, which affects individuals across the life course and is affected by experiences of stress derived from social and structural vulnerability. Drawing on data from the Soweto Syndemics study, including a locally derived stress scale and in-depth interviews, we explore the connections between flourishing and health for those living with multiple chronic illnesses in Soweto, South Africa within a syndemic of communicable and non-communicable disease. Rather than drawing on Western-centric notions of flourishing (which place emphasis on an individual's capabilities or capacities to thrive), we draw on previous ethnographic work on flourishing in Soweto, South Africa, which described how ukuphumelela, or "becoming victorious," as a social or communal affair. This conceptualization reflects local values and priorities for people's lives and the ways in which their lives are deeply intertwined with each other. We contribute to a more robust understanding of flourishing in context, of how chronic illness is experienced, and of how the role of a patient is transcended in spaces where individuals are part of a social or faith community. As people living with chronic illness(es) actively pursue the good life, health care systems must consider these pursuits as valid parts of the human experience that also challenge narrow definitions of health.

Disentangling opioids-related overdose syndemics: a scoping review.

This article reviews research investigating the synergistic interaction of opioid-related morbidity and mortality with other social, psychiatric, and biological conditions, to describe how and why it is syndemic. Opioid-related overdose syndemics are driven by commercial interests, emerging in communities facing social and economic disadvantage, and interacting with a range of other health conditions. We included articles that empirically investigated an opioid-related syndemic, discussed syndemic co-factors associated with opioid use, or framed opioid consumption conceptually in relation to syndemics. Most articles were conducted in and first authored by investigators from North America. These articles were published in journals focused on general public health (n = 20), drug use and addiction (n = 18), and infectious disease or HIV (n = 15). Most original research articles (n = 60) employed quantitative methods. Unlike scholarship from other disciplines, specifically the controversial "Deaths of Despair" (DoD) framework, most research on opioid-related overdose syndemics fails to fully articulate the macro-structural drivers of localized disease clustering. Instead, the syndemics scholarship emphasizes the clinical manifestations of opioid and substance use, illustrating a problem in translation at the heart of syndemic theory. Moreover, syndemics scholarship on opioid impacts remains largely disconnected from the wider DoD discourse, which represents a missed opportunity for equity-oriented research. Re-directing attention to the sociopolitical forces that shape opioid-related overdose syndemics is necessary to prevent future commercially-driven health crises and repair lives harmed by these deadly syndemics.

A review of place-related contextual factors in syndemics research.

This review investigates the extent to which a place-based approach has been used to conceptualize context, as well as the place-related contextual factors explored in studies that explicitly invoked a syndemic framework. The literature search focused on 29 peer-reviewed empirical syndemic studies. Only 11 studies used a place-based approach to define and measure contextual factors and the spatial context was denoted using administrative boundaries such as census tracts, counties, and countries. A narrow range of place-related contextual factors were explored and most of them were related to social and economic factors that were used to define a place. Methodological gaps like a paucity of multilevel studies and studies using a place-based approach to measure context were identified. Future syndemics research should leverage multidimensional geospatial approaches to decipher the role of place-related contextual factors in syndemic dynamics.

Gone Too Soon: priorities for action to prevent premature mortality associated with mental illness and mental distress.

Globally, too many people die prematurely from suicide and the physical comorbidities associated with mental illness and mental distress. The purpose of this Review is to mobilise the translation of evidence into prioritised actions that reduce this inequity. The mental health research charity, MQ Mental Health Research, convened an international panel that used roadmapping methods and review evidence to identify key factors, mechanisms, and solutions for premature mortality across the social-ecological system. We identified 12 key overarching risk factors and mechanisms, with more commonalities than differences across the suicide and physical comorbidities domains. We also identified 18 actionable solutions across three organising principles: the integration of mental and physical health care; the prioritisation of prevention while strengthening treatment; and the optimisation of intervention synergies across social-ecological levels and the intervention cycle. These solutions included accessible, integrated high-quality primary care; early life, workplace, and community-based interventions co-designed by the people they should serve; decriminalisation of suicide and restriction of access to lethal means; stigma reduction; reduction of income, gender, and racial inequality; and increased investment. The time to act is now, to rebuild health-care systems, leverage changes in funding landscapes, and address the effects of stigma, discrimination, marginalisation, gender violence, and victimisation.

Power, place, and access: Why history is at the center of black D.C. residents of wards 7 and 8 decisions to receive the COVID-19 vaccine.

Vaccines have played an essential role in curbing case and mortality rates due to SARS-CoV-2 in the United Sates. Still, many communities display high rates of unwillingness or inability to get a COVID-19 vaccine, limiting overall vaccination efforts and contributing to viral spread. Black Americans have expressed skepticism towards vaccines because of limited access to the technology, mistrust in its safety and efficacy, and a lack of confidence in the healthcare authorities that distribute it. This article investigates how Black residents of Wards 7 and 8 in Washington, D.C. thought about COVID-19 vaccination and why or why not they decided to vaccinate. These Wards' vaccination rates were markedly lower than those from Wards 1-6, which have substantially higher populations of White residents, affluence, access, and resources. This study involved 31 interviews with Ward 7 and 8 residents recruited through snowball sampling. We found that residents navigated the dual perceived risks of coronavirus infection and vaccination through three key frames: their relationship to their place or location, their desires to maintain autonomy over their health, and their abilities to access COVID-19 vaccines. This case study advances knowledge of vaccine utilization among marginalized communities, and how this phenomenon varies depending on local social, cultural, and political dynamics. Moreover, this research has implications for vaccine rollout efforts and the D.C. health system, as it reveals gaps in confidence and care that undermine health outcomes for Black residents.

Making morbidity multiple: History, legacies, and possibilities for global health.

Multimorbidity has been framed as a pressing global health challenge that exposes the limits of systems organised around single diseases. This article seeks to expand and strengthen current thinking around multimorbidity by analysing its construction within the field of global health. We suggest that the significance of multimorbidity lies not only in challenging divisions between disease categories but also in what it reveals about the culture and history of transnational biomedicine. Drawing on social research from sub-Saharan Africa to ground our arguments, we begin by describing the historical processes through which morbidity was made divisible in biomedicine and how the single disease became integral not only to disease control but to the extension of biopolitical power. Multimorbidity, we observe, is hoped to challenge single disease approaches but is assembled from the same problematic, historically-loaded categories that it exposes as breaking down. Next, we highlight the consequences of such classificatory legacies in everyday lives and suggest why frameworks and interventions to integrate care have tended to have limited traction in practice. Finally, we argue that efforts to align priorities and disciplines around a standardised biomedical definition of multimorbidity risks retracing the same steps. We call for transdisciplinary work across the field of global health around a more holistic, reflexive understanding of multimorbidity that foregrounds the culture and history of translocated biomedicine, the intractability of single disease thinking, and its often-adverse consequences in local worlds. We outline key domains within the architecture of global health where transformation is needed, including care delivery, medical training, the organisation of knowledge and expertise, global governance, and financing.

Perceptions and experiences of prostate cancer patients in a public tertiary hospital in urban South Africa.

ABSTRACTProstate cancer is among the most prevalent forms of cancer worldwide and is reported to have the highest incidence, mortality, and 5-year prevalence rate of all cancers among men living in Africa. Despite this widespread burden in the African continent, little is known about the perspectives and experience of prostate cancer among African men. To further understand experiences among patients living in urban South Africa, we conducted in-depth, semi-structured qualitative interviews to examine the perceptions and experiences of 28 Black African prostate cancer patients receiving treatment at a major tertiary hospital in Johannesburg, South Africa. Our data explored four major areas of patients' experiences with prostate cancer: detection, diagnosis, treatment, and follow-up care. Our results showed that the experience of living with prostate cancer among low-income, Black South African men is a stressful and emotionally painful experience due in part to men feeling that they had insufficient knowledge about their own condition and feeling disempowered or ill-equipped to manage their cancer. These feelings were strongly associated with distrust or dissatisfaction with physicians and the health care system. Resilience factors include social support from family, friends, and religious communities, acceptance of their diagnosis, religion, and positive appraisals of their medical care.

Rapid range shifts in African Anopheles mosquitoes over the last century.

Facing a warming climate, many tropical species-including the arthropod vectors of several infectious diseases-will be displaced to higher latitudes and elevations. These shifts are frequently projected for the future, but rarely documented in the present day. Here, we use one of the most comprehensive datasets ever compiled by medical entomologists to track the observed range limits of African malaria mosquito vectors (Anopheles spp.) from 1898 to 2016. Using a simple regression approach, we estimate that these species' ranges gained an average of 6.5 m of elevation per year, and the southern limits of their ranges moved polewards 4.7 km per year. These shifts would be consistent with the local velocity of recent climate change, and might help explain the incursion of malaria transmission into new areas over the past few decades. Confirming that climate change underlies these shifts, and applying similar methods to other disease vectors, are important directions for future research.

Collaborative Quality Improvement Strategy in Secondary Prevention of Cardiovascular Disease in India: Findings from a Multi-Stakeholder, Qualitative Study using Consolidated Framework for Implementation Research (CFIR).

Background: Cardiovascular disease (CVD) is highly prevalent in India, and little is known about the perception of patients and providers about a package of collaborative quality improvement (C-QIP) strategies consisting of provider-focused electronic health records-decision support system (EHR-DSS), non-physician health workers (NPHW), and patient-facing text messages to enhance the CVD care. Objective: To explore the barriers and enablers of the C-QIP strategy from the perspective of providers, health administrators, patients, and care givers in India. Methods: We conducted a qualitative study using the consolidated framework for implementation research (CFIR) to understand the challenges and facilitators of implementing C-QIP strategy to enhance CVD care in the Indian context. A diverse sample of 38 physicians, 14 non-physician health workers (nurses, pharmacists), 4 health administrators, and 16 patients and their caregivers participated in semi-structured interviews. All interviews were audio-recorded, transcribed, translated, anonymised, and coded using MAXQDA software. We used the framework method and CFIR domains to analyze the qualitative data. Results: Barriers perceived from providers' and health administrators' perspectives in providing quality CVD care were high patient volume, physician burnout, lack of robust communication or referral system, paucity of electronic health records, lack of patient counsellors, polypharmacy, poor patient adherence to medications, and lack of financial incentives. Low health literacy, high cost of treatment, misinformation bias, and difficulty in maintaining lifestyle changes were barriers from patients' perspectives. The CFIR identified key enablers for the implementation of C-QIP such as standardized treatment protocol, reduced medication errors, improved physician-patient relationships, and enhanced patient self-care through trained and supported NPHW. Barriers included: heterogenous healthcare settings, diverse patient groups and comorbidities, associated costs of care and interoperability, confidentiality, and data privacy issues around the use of EHR-DSS. Conclusion: Strategies to enhance CVD care must be low-cost, culturally acceptable, and integrated into existing care pathways.

Understanding the "Sometimes Masker": Political Orientation and Trust in the Media During the COVID-19 Pandemic.

OBJECTIVES: The COVID-19 pandemic in the United States has brought to light the problematic way partisan politics interferes with public health prevention and control measures. This study aims to investigate how Americans responded to the novel coronavirus with respect to their sociopolitical identity and masking habits. STUDY DESIGN: This mixed-methods study incorporated three ethnographic projects and surveys together, from two rural areas (in Iowa and California) and one suburban community in California. METHODS: We interviewed 156 Americans about how masking habits related to six themes: participants' perceived risk level, concern for themselves and others, support for President Trump, trust in scientific organizations, and confidence in major news outlets. We conducted content analysis of qualitative interviews and evaluated survey questions to understand how and why people masked or engaged in public health prevention practices. RESULTS: Greater perceived risk, concern for others, and trust in health and media institutions was correlated with increased masking, while support for Trump was predictive of anti-masking sentiments. Participants who diverged from these trends, specifically those who sometimes wore masks, but not always were called "sometimes maskers". These sometimes maskers often identified as politically moderate and were more likely to mask due to concern for a vulnerable person or group in their lives. CONCLUSIONS: Since one in three Americans are political moderates, understanding what promotes their adherence to public health guidelines is essential for policy makers interested in pandemic containment. Relatedly, the conservative tendency to distrust mainstream media is what separated those who reported sometimes masking from those who reported always masking.

Syndemics and clinical science.

The theory of syndemics has received increasing attention in clinical medicine since the onset of the COVID-19 pandemic, due to the synergistic interactions of the disease with pre-existing political, structural, social and health conditions. In simple terms, syndemics are synergistically interacting epidemics that occur in a particular context with shared drivers. When policymakers ask why some communities have higher death rates from COVID-19 compared with other communities, those working from a syndemics framework argue that multiple factors synergistically work in tandem, and populations with the highest morbidity and mortality experience the greatest impact of these interactions. In this Perspective, we use specific case examples to illustrate these concepts. We discuss the emergence of syndemics, how epidemics interact, and what scientists, clinicians and policymakers can do with this information.