National and international codes of research conduct have been established in most industrialized nations to ensure greater adherence to ethical research practices. Despite these safeguards, however, traditional research approaches often continue to stigmatize marginalized and vulnerable communities. Community-based participatory research (CBPR) has evolved as an effective new research paradigm that attempts to make research a more inclusive and democratic process by fostering the development of partnerships between communities and academics to address community-relevant research priorities. As such, it attempts to redress ethical concerns that have emerged out of more traditional paradigms. Nevertheless, new and emerging ethical dilemmas are commonly associated with CBPR and are rarely addressed in traditional ethical reviews. We conducted a content analysis of forms and guidelines commonly used by institutional review boards (IRBs) in the USA and research ethics boards (REBs) in Canada. Our intent was to see if the forms used by boards reflected common CBPR experience. We drew our sample from affiliated members of the US-based Association of Schools of Public Health and from Canadian universities that offered graduate public health training. This convenience sample (n = 30) was garnered from programs where application forms were available online for download between July and August, 2004. Results show that ethical review forms and guidelines overwhelmingly operate within a biomedical framework that rarely takes into account common CBPR experience. They are primarily focused on the principle of assessing risk to individuals and not to communities and continue to perpetuate the notion that the domain of "knowledge production" is the sole right of academic researchers. Consequently, IRBs and REBs may be unintentionally placing communities at risk by continuing to use procedures inappropriate or unsuitable for CBPR. IRB/REB procedures require a new framework more suitable for CBPR, and we propose alternative questions and procedures that may be utilized when assessing the ethical appropriateness of CBPR.

The disappointing results of many public health interventions have been attributed in part to the lack of meaningful community engagement in the planning, implementation, and evaluation of these initiatives. Community-based participatory research (CBPR) has emerged as an alternative research paradigm that directly involves community members in all aspects of the research process. Their involvement is often said to be an empowering experience that builds capacity. In this paper, we interrogate these assumptions, drawing on interview data from a qualitative study investigating the experiences of 18 peer researchers (PRs) recruited from nine CBPR studies in Toronto, Canada. These individuals brought to their respective projects experience of homelessness, living with HIV, being an immigrant or refugee, identifying as transgender, and of having a mental illness. The reflections of PRs are compared to those of other research team members collected in separate focus groups. Findings from these interviews are discussed with an attention to Foucault's concept of ‘governmentality’, and compared against popular community-based research principles developed by Israel and colleagues. While PRs spoke about participating in CBPR initiatives to share their experience and improve conditions for their communities, these emancipatory goals were often subsumed within corporatist research environments that limited participation. Overall, this study offers a much-needed theoretical engagement with this popular research approach and raises critical questions about the limits of community engagement in collaborative public health research.

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BackgroundDrug use is associated with increased morbidity and mortality but people who use drugs experience significant barriers to care. Data are needed about the care experiences of people who use drugs to inform interventions and quality improvement initiatives. The objective of this study is to describe and characterize the experience of acute care for people who use drugs.MethodsWe conducted a qualitative descriptive study. We recruited people with a history of active drug use at the time of an admission to an acute care hospital, who were living with HIV or hepatitis C, in Toronto and Ottawa, Canada. Data were collected in 2014 and 2015 through semi-structured interviews, audio-recorded and transcribed, and analyzed thematically.ResultsTwenty-four adults (18 men, 6 women) participated. Participants predominantly recounted experiences of stigma and challenges accessing care. We present the identified themes in two overarching domains of interest: perceived effect of drug use on hospital care and impact of care experiences on future healthcare interactions. Participants described significant barriers to pain management, often resulting in inconsistent and inadequate pain management. They described various strategies to navigate access and receipt of healthcare from being “an easy patient” to self-advocacy. Negative experiences influenced their willingness to seek care, often resulting in delayed care seeking and targeting of certain hospitals.ConclusionDrug use was experienced as a barrier at all stages of hospital care. Interventions to decrease stigma and improve our consistency and approach to pain management are necessary to improve the quality of care and care experiences of those who use drugs.

Community-based organizations are important health system stakeholders as they provide numerous, often highly valued programs and services to the members of their community. However, community-based organizations are described using diverse terminology and concepts from across a range of disciplines. To better understand the literature related to community-based organizations in the health sector (i.e., those working in health systems or more broadly to address population or public health issues), we conducted a scoping review by using an iterative process to identify existing literature, conceptually map it, and identify gaps and areas for future inquiry.We searched 18 databases and conducted citation searches using 15 articles to identify relevant literature. All search results were reviewed in duplicate and were included if they addressed the key characteristics of community-based organizations or networks of community-based organizations. We then coded all included articles based on the country focus, type of literature, source of literature, academic discipline, disease sector, terminology used to describe organizations and topics discussed.We identified 186 articles addressing topics related to the key characteristics of community-based organizations and/or networks of community-based organizations. The literature is largely focused on high-income countries and on mental health and addictions, HIV/AIDS or general/unspecified populations. A large number of different terms have been used in the literature to describe community-based organizations and the literature addresses a range of topics about them (mandate, structure, revenue sources and type and skills or skill mix of staff), the involvement of community members in organizations, how organizations contribute to community organizing and development and how they function in networks with each other and with government (e.g., in policy networks).Given the range of terms used to describe community-based organizations, this scoping review can be used to further map their meanings/definitions to develop a more comprehensive typology and understanding of community-based organizations. This information can be used in further investigations about the ways in which community-based organizations can be engaged in health system decision-making and the mechanisms available for facilitating or supporting their engagement.

IntroductionNotwithstanding the efficacy of oral pre‐exposure prophylaxis (PrEP) in clinical trials, a number of obstacles exist to achieving population‐level impact among gay, bisexual and other men who have sex with men (GBM). However, few studies have explored the subjective experiences of GBM PrEP users and non‐users in the community, outside of clinical trials. The objectives of this study were to explore GBM's experiences of considering, accessing and using (or not using) PrEP, and to understand emerging sexual health, social and community issues among GBM in the PrEP era.MethodsFrom October 2015 to March 2016, we purposively sampled PrEP‐naïve and PrEP‐experienced GBM from community organizations and health centres in Toronto, Canada. In‐depth, 45‐ to 90‐minute semi‐structured interviews explored PrEP perspectives and decision‐making, access, initiation, use over time, sexual practices and psychosocial considerations. Interviews were recorded, transcribed verbatim, uploaded into NVIVO, reviewed using thematic analysis and then contrasted with the PrEP cascade.ResultsParticipants included PrEP users (n = 15) and non‐users (n = 14) (mean age = 36.7 years; SD = 8.2), largely gay‐identified (86.2%), cisgender male (89.7%) and white (79.3%). Themes indicate not only correspondences, but also limitations of the PrEP cascade by complicating a user/non‐user binary and challenging the unilateral presupposition that HIV risk perception leads to PrEP acceptance. Findings further call into question assumptions of a linear stage progression and retention in care as a universal endpoint, instead revealing alternate trajectories of seasonal or intermittent PrEP use and, for some, an end goal of terminating PrEP. GBM's narratives also revealed potent psychological/affective experiences of untethering sex from HIV anxiety; multifaceted PrEP stigma; and challenges to sexual norms and practices that complicate existing behavioural prevention strategies and sexual and social relationships.ConclusionsAn expanded PrEP cascade should consider alternate trajectories of use based on dynamic relationships and behavioural risks that may call for seasonal or intermittent use; systemic barriers in access to and sustaining PrEP; and multiple end goals including PrEP maintenance and discontinuation. Incorporating GBM's lived experiences, evolving preferences, and psychosocial and community‐level challenges into PrEP implementation models, rather than a circumscribed biomedical approach, may more effectively support HIV prevention and GBM's broader sexual and psychological health.

BackgroundAcross North America, the opioid overdose epidemic is leading to increasing hospitalizations of people who use drugs (PWUD). However, hospitals are ill-prepared to meet the needs of PWUD. We focus on illicit drug use while admitted to hospital and how PWUD and health care providers describe, respond, and attempt to manage its use. Methods and findingsUsing varied purposive methods in Toronto and Ottawa, we recruited n = 24 PWUD (who self-reported that they were living with HIV and/or HCV infection; currently or had previously used drugs or alcohol in ways that were harmful; had a hospital admission in the past five years) and n = 26 health care providers (who were: currently working in an academic hospital as a physician, nurse, social worker or other allied health professional; and 2) providing care to this patient group). All n = 50 participants completed a short, socio-demographic questionnaire and an audio-recorded semi-structured interview about receiving or providing acute care in a hospital between 04/2014 and 05/2015. Patient participants received $25 CAD and return transit fare; provider participants received a $50 CAD gift card for a bookseller. All participants provided informed consent. Audio-recordings were transcribed verbatim, corrected, and uploaded to NVivo 10. Using the seven-step framework method, transcripts were coded line-by-line and managed using NVvivo. An analytic framework was created by grouping and mapping the codes. Preliminary analyses were presented to advisory group members for comment and used to refine the interpretation. Questionnaire data were managed using SPSS version 22.0 and descriptive statistics were used to describe the participants. Many but not all patient participants spoke about using psycho-active substances not prescribed to them during a hospital admission. Attempts to avoid negative experiences (e.g., withdrawal, boredom, sadness, loneliness and/or untreated pain) were cited as reasons for illicit drug use. Most tried to conceal their illicit drug use from health care providers. Patients described how their self-reported level of pain was not always believed, tolerance to opioids was ignored, and requests for higher doses of pain medications denied. Some health care providers were unaware of on-site illicit drug use; others acknowledged it occurred. Few could identify a hospital policy specific to illicit drug use and most used their personal beliefs to guide their responses to it (e.g., ignore it, increase surveillance of patients, reprimands, loss of privileges/medications, threats of immediate discharge should it continue, and substitution dosing of medication). ConclusionsProviders highlighted gaps in institutional guidance for how they ought to appropriately respond to in-hospital substance use. Patients attempted to conceal illicit drug use in environments with no institutional policies about such use, leading to varied responses that were inconsistent with the principles of patient centred care and reflected personal beliefs about illicit drug us...

In this paper we examine "ethics creep", a concept developed by Haggerty (2004) to account for the increasing bureaucratization of research ethics boards and institutional review boards (REB/IRBs) and the expanding reach of ethics review. We start with an overview of the recent surge of academic interest in ethics creep and similar arguments about the prohibitive effect of ethics review. We then introduce elements of Michel Foucault's theoretical framework which are used to inform our analysis of empirical data drawn from a multi-phase study exploring the accessibility of community-engaged research within existing ethics review structures in Canada. First, we present how ethics creep emerged both explicitly and implicitly in our data. We then present data that demonstrate how REB/IRBs are experiencing their own form of regulation. Finally, we present data that situate ethics review alongside other trends affecting the academy. Our results show that ethics review is growing in some ways while simultaneously being constrained in others. Drawing on Foucauldian theory we reframe ethics creep as a repressive hypothesis which belies the complexity of the phenomenon it purports to explain. Our discussion complicates ethics creep by proposing an understanding of REB/IRBs that locates them at the intersection of various neoliberal discourses about the role of science, ethics, and knowledge production.