Patient perspectives on pharmacogenomic (PGx) testing for antidepressant prescribing in primary care: a qualitative description study.

Many patients with major depressive disorder (MDD) try multiple antidepressants before finding one that works well and is tolerable. Pharmacogenomic (PGx) testing was developed to facilitate more efficacious prescribing. This technology has not been robustly implemented clinically. Patient perspectives are critical to policy decisions, but the views of patients with MDD about the use of PGx testing to guide antidepressant prescribing have not been extensively examined, particularly in publicly funded healthcare systems. The purpose of this qualitative description study was to produce actionable patient perspectives evidence to inform future technology assessment of PGx testing. We conducted semi-structured interviews with 21 adults with MDD for which antidepressants were indicated in Ontario, Canada, and used the Ontario Decision Determinants Framework to conduct an unconstrained deductive content analysis. Patients expressed views about the overall clinical benefit of PGx testing in depression care, preferences for deployment of testing, perspectives on ethical considerations, opinions about equity and patient care, and beliefs regarding the feasibility of adopting PGx testing into the healthcare system. They also worried about the possibility of conflicts of interest between PGx test manufacturers and pharmaceutical companies. This study provides policymakers with patient priorities to facilitate the development of patient-centred policies. It highlights that formal adoption of PGx testing into the healthcare system requires a focus on equity of access and health outcomes.

Family physicians' moral distress when caring for patients experiencing social inequities: a critical narrative inquiry in primary care.

BACKGROUND: Family physicians (GPs) working with patients experiencing social inequities have witnessed patients' healthcare needs proliferate. Alongside increased workload demands fostered within current remuneration structures, this has generated concerning reports of family physician attrition and possible experiences of moral distress. AIM: To explore stories of moral distress shared by family physicians caring for patients experiencing health needs related to social inequities. DESIGN AND SETTING: A critical narrative inquiry, informed by the analytic lens of moral distress, conducted in Ontario, Canada. METHOD: Twenty family physicians were recruited through purposive and snowball sampling via word of mouth and email mailing lists relevant to addictions and mental health care. Physicians participated in two narrative interviews and had the opportunity to review the interview transcripts. RESULTS: Family physicians' accounts of moral distress were linked to policies governing physician remuneration, scope of practice, and the availability of social welfare programmes. These structural elements left physicians unable to get patients much needed support and resources. CONCLUSION: This study provides evidence that physicians experience moral distress when unable to offer crucial resources to improve the health of patients with complex social needs resulting from structural features of the Canadian health and social welfare system. Further research is needed to critically interrogate how health and social welfare systems around the world can be reformed to improve the health of patients and increase family physicians' professional quality of life, potentially improving retention.

For health or for profit? Understanding how private financing and for-profit delivery operate within Canadian healthcare (4H|4P): protocol for a multimethod knowledge mobilisation research project.

INTRODUCTION: Privatisation through the expansion of private payment and investor-owned corporate healthcare delivery in Canada raises potential conflicts with equity principles on which Medicare (Canadian public health insurance) is founded. Some cases of privatisation are widely recognised, while others are evolving and more hidden, and their extent differs across provinces and territories likely due in part to variability in policies governing private payment (out-of-pocket payments and private insurance) and delivery. METHODS AND ANALYSIS: This pan-Canadian knowledge mobilisation project will collect, classify, analyse and interpret data about investor-owned privatisation of healthcare financing and delivery systems in Canada. Learnings from the project will be used to develop, test and refine a new conceptual framework that will describe public-private interfaces operating within Canada's healthcare system. In Phase I, we will conduct an environmental scan to: (1) document core policies that underpin public-private interfaces; and (2) describe new or emerging forms of investor-owned privatisation ('cases'). We will analyse data from the scan and use inductive content analysis with a pragmatic approach. In Phase II, we will convene a virtual policy workshop with subject matter experts to refine the findings from the environmental scan and, using an adapted James Lind Alliance Delphi process, prioritise health system sectors and/or services in need of in-depth research on the impacts of private financing and investor-owned delivery. ETHICS AND DISSEMINATION: We have obtained approval from the research ethics boards at Simon Fraser University, University of British Columbia and University of Victoria through Research Ethics British Columbia (H23-00612). Participants will provide written informed consent. In addition to traditional academic publications, study results will be summarised in a policy report and a series of targeted policy briefs distributed to workshop participants and decision/policymaking organisations across Canada. The prioritised list of cases will form the basis for future research projects that will investigate the impacts of investor-owned privatisation.

Lived experiences of pregnancy and prison through a reproductive justice lens: A qualitative meta-synthesis.

As rates with which women are incarcerated have risen around the world, research examining how incarceration affects the health of people who are pregnant, their newborns, and their family members has burgeoned. Lived experience is seldom accounted for in this research, however, highlighting a gap with relevance to advocates, policy makers, researchers, and practitioners seeking to better understand health inequities and redress human suffering. In this paper we present a qualitative meta-synthesis of 31 papers reporting qualitative studies of how people who are incarcerated in prisons and jails around the world experience pregnancy, labour and childbirth, and the postpartum period. Theoretical perspectives from the reproductive justice and prison abolition movements guided our analysis, which identified connectedness (to baby) and disconnectedness (from support) as twinned themes characterizing the lived experiences of navigating pregnancy in a carceral institution. We argue that the conditions of reproductive justice - including self-determination in pregnancy, in parenting, and in managing one's reproductive capacity - are fundamentally irreconcilable with mass incarceration. We conclude by considering the strategic opportunities for health practitioners and researchers to support the movement for prison abolition by mobilizing health-focused arguments for decarceration.

Primary care-based interventions to address the financial needs of patients experiencing poverty: a scoping review of the literature.

BACKGROUND: It is broadly accepted that poverty is associated with poor health, and the health impact of poverty has been explored in numerous high-income country settings. There is a large and growing body of evidence of the role that primary care practitioners can play in identifying poverty as a health determinant, and in interventions to address it. PURPOSE OF STUDY: This study maps the published peer-reviewed and grey literature on primary care setting interventions to address poverty in high-income countries in order to identify key concepts and gaps in the research. This scoping review seeks to map the tools in use to identify and address patients' economic needs; describe the key types of primary care-based interventions; and examine barriers and facilitators to successful implementation. METHODS: Using a scoping review methodology, we searched five databases, the grey literature and the reference lists of relevant studies to identify studies on interventions to address the economic needs-related social determinants of health that occur in primary health care delivery settings, in high-income countries. Findings were synthesized narratively, and examined using thematic analysis, according to iteratively identified themes. RESULTS: Two hundred and fourteen papers were included in the review and fell into two broad categories of description and evaluation: screening tools, and economic needs-specific interventions. Primary care-based interventions that aim to address patients' financial needs operate at all levels, from passive sociodemographic data collection upon patient registration, through referral to external services, to direct intervention in addressing patients' income needs. CONCLUSION: Tools and processes to identify and address patients' economic social needs range from those tailored to individual health practices, or addressing one specific dimension of need, to wide-ranging protocols. Primary care-based interventions to address income needs operate at all levels, from passive sociodemographic data collection, through referral to external services, to direct intervention. Measuring success has proven challenging. The decision to undertake this work requires courage on the part of health care providers because it can be difficult, time-consuming and complex. However, it is often appreciated by patients, even when the scope of action available to health care providers is quite narrow.

Evidence-Based Decision Making 3: Health Technology Assessment.

This chapter begins with a brief introduction to health technology assessment (HTA). HTA is concerned with the systematic evaluation of the consequences of the adoption and use of new health technologies and to improve the evidence on existing technologies. The objective of mainstream HTA is to support evidence-based decision- and policy-making that encourage the uptake of efficient and effective health-care technologies. This chapter provides a basic framework for conducting an HTA, as well as some fundamental concepts and challenges in assessing health technologies. Whether HTA is beneficial-supporting timely access to needed technologies-or detrimental depends on three critical issues: when the assessment is performed; how it is performed; and how the findings are used.

An institutional ethnographic analysis of public and patient engagement activities at a national health technology assessment agency.

OBJECTIVE: The practice of public and patient engagement (PPE) in health technology assessment (HTA) has spread worldwide, yet gaps in knowledge remain. We carried out an institutional ethnography of the Canadian Agency for Drugs and Technologies in Health (CADTH) public and patient involvement in HTA. METHODS: The research took place over 15 months and included observational work in the institutional settings, text review, and interviews with individuals working for or involved with the agency. RESULTS: We found that despite demonstrated commitment to PPE, organizational history, governance structure, and practices were impediments to a unified approach to PPE. Unclear role descriptions for committee members and differences in philosophy and priority given to PPE across the organization presented challenges to effective participation. The high degree of value given to evidence-based principles at times conflicted with meaningful integration of patient input. A lack of clear goals and processes, roles, and differential treatment of evidence in PPE served to minimize the importance of patient experiences and to displace their validity. An acknowledgment of conflicts between multiple epistemic traditions at work within HTA activities may strengthen organizational approaches to PPE. CONCLUSION: HTA organizations can learn from this study by reflecting on the challenges described and the recommendations offered to address them. We suggest solidifying CADTH's commitment to PPE with clear agency-wide roles and direction, values, and outcomes, a comprehensive framework, and policy and procedures. An acknowledgment of diverse epistemic traditions, as well as leadership and expertise in PPE, will strengthen CADTH's PPE activities and sustain its leadership position in the HTA field.

Supporting the use of research evidence in decision-making in crisis zones in low- and middle-income countries: a critical interpretive synthesis.

BACKGROUND: Decision-makers in crisis zones are faced with the challenge of having to make health-related decisions under limited time and resource constraints and in light of the many factors that can influence their decisions, of which research evidence is just one. To address a key gap in the research literature about how best to support the use of research evidence in such situations, we conducted a critical interpretive synthesis approach to develop a conceptual framework that outlines the strategies that leverage the facilitators and address the barriers to evidence use in crisis zones. METHODS: We systematically reviewed both empirical and non-empirical literature and used an interpretive analytic approach to synthesise the results and develop the conceptual framework. We used a 'compass' question to create a detailed search strategy and conducted electronic searches in CINAHL, EMBASE, MEDLINE, SSCI and Web of Science. A second reviewer was assigned to a representative sample of articles. We purposively sampled additional papers to fill in conceptual gaps. RESULTS: We identified 21 eligible papers to be analysed and purposively sampled an additional 6 to fill conceptual gaps. The synthesis resulted in a conceptual framework that focuses on evidence use in crisis zones examined through the lens of four systems - political, health, international humanitarian aid and health research. Within each of the four systems, the framework identifies the most actionable strategies that leverage the facilitators and address the barriers to evidence use. CONCLUSIONS: This study presents a new conceptual framework that outlines strategies that leverage the facilitators and address the barriers to evidence use in crisis zones within different systems. This study expands on the literature pertaining to evidence-informed decision-making.

Access to midwifery care for people of low socio-economic status: a qualitative descriptive study.

BACKGROUND: Despite public funding of midwifery care, people of low-socioeconomic status are less likely to access midwifery care in Ontario, Canada, but little is known about barriers that they experience in accessing midwifery care. The purpose of this study was to examine the barriers and facilitators to accessing midwifery care experienced by people of low-socioeconomic status. METHODS: A qualitative descriptive study design was used. Semi-structured interviews were conducted with 30 pregnant and post-partum people of low-socioeconomic status in Hamilton, Ontario from January to May 2018. Transcribed interviews were coded using open coding techniques and thematically analyzed. RESULTS: We interviewed 13 midwifery care recipients and 17 participants who had never received care from midwives. Four themes arose from the interviews: "I had no idea…", "Babies are born in hospitals", "Physicians as gateways into prenatal care", and "Why change a good thing?". Participants who had not experienced midwifery care had minimal knowledge of midwifery and often had misconceptions about midwives' scope of practice and education. Prevailing beliefs about pregnancy and birth, particularly concerns about safety, drove participants to seek care from a physician. Physicians are the entry point into the health care system for many, yet few participants received information about midwifery care from physicians. Participants who had experienced midwifery care found it to be an appropriate match for the needs of people of low socioeconomic status. Word of mouth was a primary source of information about midwifery and the most common reason for people unfamiliar with midwifery to seek midwifery care. CONCLUSIONS: Access to midwifery care is constrained for people of low-socioeconomic status because lack of awareness about midwifery limits the approachability of these services, and because information about midwifery care is often not provided by physicians when pregnant people first contact the health care system. For people of low-socioeconomic status, inequitable access to midwifery care may be exacerbated by lack of knowledge about midwifery within social networks and a tendency to move passively through the health care system which traditionally favours physician care. Targeted efforts to address this issue are necessary to reduce disparities in access to midwifery care.

Women's preferences and experiences of cervical cancer screening in rural and remote areas: a systematic review and qualitative meta-synthesis.

INTRODUCTION: Cervical cancer is one of the leading causes of mortality in women. Population-based cervical cancer screening programs have been highly effective in reducing the incidence and mortality of cervical cancer worldwide. However, disparities remain in women's cervical cancer screening participation rates, especially in rural and remote areas, where access to health care may be circumscribed due to logistical barriers. Until now, there has been no effort to review and synthesize the perspectives and experiences of women accessing cervical cancer screening in rural and remote areas. This systematic review and qualitative meta-synthesis of 14 studies aimed to describe and elaborate the issues women face when accessing cervical cancer screening in rural and remote areas. METHODS: This study used the qualitative meta-synthesis approach to review 14 studies on rural women's participation in cervical cancer screening. This research approach synthesized findings from multiple, primary qualitative studies to produce a new interpretation of the phenomenon while retaining the original meaning of each qualitative study. RESULTS: After 4937 citations were screened by database searching, 117 were retrieved for full-text review, of which 14 studies were included. This study identified two themes that modulate rural women's access to cervical cancer screening: interactions with healthcare providers and healthcare system access. Furthermore, this study found that women frequently expressed issues around patient-centered care in their interactions with healthcare providers. The implications of these findings for program design and delivery efforts in rural and remote areas are discussed. CONCLUSION: This article provides the foundation for tailoring interventions and programming to increase cervical cancer screening rates in women who reside in rural and remote areas. This review also clarifies the factors of patient-centered care that may be adopted to enhance the quality of care for women in rural and remote areas. In summary, this systematic review and qualitative meta-synthesis provide information about women's perspectives and experiences accessing cervical cancer screening in rural and remote areas. The review has strong implications for this population and can be used to inform future research and program design initiatives.

Ethical Challenges Related to Patient Involvement in Health Technology Assessment.

Including information and values from patients in HTA has the potential to improve both the process and outcomes of health technology policy decisions. Accordingly, funding and structural incentives to include patients in HTA activities have increased over the past several years. Unfortunately, these incentives have not yet been accompanied by a corresponding increase in resources, time, or commitment to responsiveness. In this Perspectives piece, we reflect on our collective experiences participating in, conducting, and overseeing patient engagement activities within HTA to highlight the ethical challenges associated with this area of activity. While we remain committed to the idea that patient engagement activities strengthen the findings, relevance, and legitimacy of health technology policy, we are deeply concerned about the potential for these activities to do ethical harm. We use this analysis to call for action to introduce strong protections against ethical violations that may harm patients participating in HTA engagement activities.

Problems of problem-based learning: Towards transformative critical pedagogy in medical education.

Problem-based medical education is based in a biomedical worldview that works to entrench deterministic ways of thinking about socioculturally-influenced health disparities in the minds of medical trainees. This perspective paper considers the utility of Paolo Freire's critical pedagogy as a means of redressing this issue, as it may enable medical learners to perceive and address the social sources of illness that shape their patients' lives. With an eye to advancing health equity, and educating health professionals who are responsive to marginalized and vulnerable communities, this paper considers how a problem-posing medical education could redefine physicians' relationships to knowledge, identity, and to their patients.

Women's perspectives on the ethical implications of non-invasive prenatal testing: a qualitative analysis to inform health policy decisions.

BACKGROUND: Non-Invasive Prenatal Testing (NIPT) is a technology which provides information about fetal genetic characteristics (including sex) very early in pregnancy by examining fetal DNA obtained from a sample of maternal blood. NIPT is a morally complex technology that has advanced quickly to market with a strong push from industry developers, leaving many areas of uncertainty still to be resolved, and creating a strong need for health policy that reflects women's social and ethical values. We approach the need for ethical policy-making by studying the use of NIPT and emerging policy in the province of Ontario, Canada. METHODS: Using an adapted version of constructivist grounded theory, we conducted interviews with 38 women who have had personal experiences with NIPT. We used an iterative process of data collection and analysis and a staged coding strategy to conduct a descriptive analysis of ethics issues identified implicitly and explicitly by women who have been affected by this technology. RESULTS: The findings of this paper focus on current ethical issues for women seeking NIPT, including place in the prenatal pathway, health care provider counselling about the test, industry influence on the diffusion of NIPT, consequences of availability of test results. Other issues gain relevance in the context of future policy decisions regarding NIPT, including funding of NIPT and principles that may govern the expansion of the scope of NIPT. These findings are not an exhaustive list of all the potential ethical issues related to NIPT, but rather a representation of the issues which concern women who have personal experience with this test. CONCLUSIONS: Women who have had personal experience with NIPT have concerns and priorities which sometimes contrast dramatically with the theoretical ethics literature. These findings suggest the importance of engaging patients in ethical deliberation about morally complex technologies, and point to the need for more deliberative patient engagement work in this area.

Reconciling ethical and economic conceptions of value in health policy using the capabilities approach: A qualitative investigation of Non-Invasive Prenatal Testing.

When evaluating new morally complex health technologies, policy decision-makers consider a broad range of different evaluations, which may include the technology's clinical effectiveness, cost effectiveness, and social or ethical implications. This type of holistic assessment is challenging, because each of these evaluations may be grounded in different and potentially contradictory assumptions about the technology's value. One such technology where evaluations conflict is Non-Invasive Prenatal Testing (NIPT). Cost-effectiveness evaluations of NIPT often assess NIPT's ability to deliver on goals (i.e preventing the birth of children with disabilities) that social and ethical analyses suggest it should not have. Thus, cost effectiveness analyses frequently contradict social and ethical assessments of NIPT's value. We use the case of NIPT to explore how economic evaluations using a capabilities approach may be able to capture a broader, more ethical view of the value of NIPT. The capabilities approach is an evaluative framework which bases wellbeing assessments on a person's abilities, rather than their expressed preferences. It is linked to extra-welfarist approaches in health economic assessment. Beginning with Nussbaum's capability framework, we conducted a directed qualitative content analysis of interview data collected in 2014 from 27 Canadian women with personal experience of NIPT. We found that eight of Nussbaum's ten capabilities related to options, states, or choices that women valued in the context of NIPT, and identified one new capability. Our findings suggest that women value NIPT for its ability to provide more and different choices in the prenatal care pathway, and that a capabilities approach can indeed capture the value of NIPT in a way that goes beyond measuring health outcomes of ambiguous social and ethical value. More broadly, the capabilities approach may serve to resolve contradictions between ethical and economic evaluations of health technologies, and contribute to extra-welfarist approaches in the assessment of morally complex health technologies.

Behavioral activation group therapy for reducing depressive symptoms and improving quality of life: a feasibility study.

BACKGROUND: Depression is associated with a loss of productivity and noticeable personal, social, and economic decline; it affects more than 350 million people worldwide. Behavioral activation (BA), derived from cognitive behavioral therapy, has drawn increasingly more interest as a means of treatment for major depressive disorder due to its relative cost-effectiveness and efficacy. In this study, we disseminate findings from a feasibility study evaluating barriers to implementing a group BA program for major depressive disorder. The purpose of this feasibility study is to assess both patient and clinician perceptions on components of a group-based behavioral activation (BA) program. In particular, this feasibility study provides in-depth evaluation of the acceptability of BA prior to the design and implementation of a randomized trial to investigate BA effectiveness. Findings from this study directly informed decisions regarding the design and implementation of BA during the pilot trial. Specific components of BA were assessed and modified based on the results of this study. METHODS: This qualitative study was completed through the Mood Disorders Program at St. Joseph's Healthcare Hamilton. The authors of this study used data from two focus group sessions, one consisting of an interdisciplinary group of clinicians working in the Mood Disorders Program, and the other of registered outpatients of the Mood Disorders Program with a confirmed clinical diagnosis of depression. The benefits of offering this program in a group format, mainly social skill development opportunities and the use of technology such as activity tracking device, smart phones, and tablets during the therapy sessions, are a major focus of both the clinician and patient groups. Both groups emphasized the importance of offering sustainable activation. RESULTS: Differences in opinions existed between staff and patient groups regarding the use of technology in the program, though ultimately it was agreed upon that technology could be useful as a therapeutic aid. All participants agreed that behavioral activation was essential to the development of positive habits and routines necessary for recovery from depression. Patients agreed the program looked sustainable and stressed the potential benefit for improving depressive symptoms. CONCLUSIONS: Discussions from clinician and patient-centered focus groups directly informed decisions regarding the design and implementation of BA during the pilot trial. Specific components of BA were assessed and modified based on the results of this study. These findings provide insight for clinicians providing behavioral activation programming, and will serve as a framework for the development of the Out of the Blues program, a group-based BA program to be piloted in the Mood Disorders Program at St. Joseph's Healthcare Hamilton. TRIAL REGISTRATION: Clinical Trials registration number NCT02045771.

Type 2 diabetes patients' and providers' differing perspectives on medication nonadherence: a qualitative meta-synthesis.

BACKGROUND: Poor adherence to medication regimens increases adverse outcomes for patients with Type 2 diabetes. Improving medication adherence is a growing priority for clinicians and health care systems. We examine the differences between patient and provider understandings of barriers to medication adherence for Type 2 diabetes patients. METHODS: We searched systematically for empirical qualitative studies on the topic of barriers to medication adherence among Type 2 diabetes patients published between 2002-2013; 86 empirical qualitative studies qualified for inclusion. Following qualitative meta-synthesis methods, we coded and analyzed thematically the findings from studies, integrating and comparing findings across studies to yield a synthetic interpretation and new insights from this body of research. RESULTS: We identify 7 categories of barriers: (1) emotional experiences as positive and negative motivators to adherence, (2) intentional non-compliance, (3) patient-provider relationship and communication, (4) information and knowledge, (5) medication administration, (6) social and cultural beliefs, and (7) financial issues. Patients and providers express different understandings of what patients require to improve adherence. Health beliefs, life context and lay understandings all inform patients' accounts. They describe barriers in terms of difficulties adapting medication regimens to their lifestyles and daily routines. In contrast, providers' understandings of patients poor medication adherence behaviors focus on patients' presumed needs for more information about the physiological and biomedical aspect of diabetes. CONCLUSIONS: This study highlights key discrepancies between patients' and providers' understandings of barriers to medication adherence. These misunderstandings span the many cultural and care contexts represented by 86 qualitative studies. Counseling and interventions aimed at improving medication adherence among Type 2 diabetes might become more effective through better integration of the patient's perspective and values concerning adherence difficulties and solutions.

Women's Experiences of Publicly Funded Non-Invasive Prenatal Testing in Ontario, Canada: Considerations for Health Technology Policy-Making.

Non-invasive prenatal testing (NIPT) via fetal DNA in maternal blood has been publicly funded in Ontario, Canada, for high-risk women since 2014. We solicited women's experiences and values related to this new health technology to describe how this test is currently being used in Ontario and to provide information about patient priorities to inform future policy decisions about the use of NIPT. Guided by constructivist grounded theory methodology, we interviewed 38 women who had diverse personal experiences with NIPT. Participants' accounts of their values for decision making about NIPT heavily relied on three mutually modulating factors: timing, accuracy, and risk. The values expressed by women conflict with the way that publicly funded NIPT has typically been implemented in Ontario. We offer recommendations for how NIPT might be integrated into prenatal care pathways in a way more consistent with women's values.

Evidence-based decision-making 3: Health technology assessment.

This chapter begins with a brief introduction to health technology assessment (HTA). HTA is concerned with the systematic evaluation of the consequences of the adoption and use of new health technologies and improving the evidence on existing technologies. The objective of mainstream HTA is to support evidence-based decision- and policy-making that encourage the uptake of efficient and effective health care technologies. This chapter provides a basic framework for conducting an HTA as well as some fundamental concepts and challenges in assessing health technologies. A case study of the assessment of drug eluting stents in Ontario is presented to illustrate the HTA process. Whether HTA is beneficial-supporting timely access to needed technologies-or detrimental depends on three critical issues: when the assessment is performed; how it is performed; and how the findings are used.