Health Policy and Management

Background: Co-design is an approach to engaging stakeholders in health and social system change that is rapidly gaining traction, yet there are also questions about the extent to which there is meaningful engagement of structurally vulnerable communities and whether co-design leads to lasting system change. The McMaster University Co-Design Hub with Vulnerable Populations Hub ('the Hub') is a three-year interdisciplinary project with the goal of facilitating partnerships, advancing methods of co-design with vulnerable populations, and mobilising knowledge. Aims and objectives: A developmental evaluation approach inspired by experience-based co-design was used to co-produce a theory of change to understand how the co-design process could be used to creatively co-design a co-design hub with structurally vulnerable populations. Methods: Twelve community stakeholders with experience participating in a co-design project were invited to participate in two online visioning events to co-develop the goals, priorities, and objectives of the Hub. Qualitative data were analysed using a thematic content analysis approach. Findings: A theory of change framework was co-developed that outlines a future vision for the Hub and strategies to achieve this, and a visual graphic is presented. Discussion and conclusions: Through critical reflection on the work of the Hub, we focus on the co-creative methods that were applied when co-designing the Hub's theory of change. Moreover, we illustrate how co-creative processes can be applied to embrace the complexity and vulnerability of all stakeholders and plan for system change with structurally vulnerable populations.

Background: Out-of-pocket costs (OOPC) associated with treatment have significant implications on quality of life and survival in cancer patients. Head and neck cancer patients face unique treatment-related challenges, but to date OOPC have been understudied in this population. Aims: This study aims to identify and measure OOPC for patients with head and neck cancer (HNC) in Ontario. Methods: HNC patients between 2015 and 2018 at Princess Margaret Cancer Centre in Toronto were recruited. Participants completed OOPC questionnaires and lost income questions during radiation, post-surgery, and 3, 6, 12, and 24 months after completion of treatment. Associations between OOPC and treatment modality and disease site were tested with multivariable hurdle regression. Results: A total of 1545 questionnaires were completed by 657 patients. Median estimated OOPC for the total duration of treatment for participants undergoing chemoradiation was $1452 [$0–14 616], for surgery with adjuvant radiation or chemoradiation (C/RT) was $1626, for radiation therapy alone was $635, and for surgery alone was $360. The major expenses for participants at the mid-treatment time-point was travel (mean $424, standard error of the mean [SEM] $34) and meals, parking, and accommodations (mean $617, SEM $67). In multivariable analysis, chemoradiation, surgery with C/RT, and radiation were associated with significantly higher OOPC than surgery alone during treatment (791% higher, p <.001; 539% higher, p <.001; 370% higher, p <.001 respectively) among patients with non-zero OOPC. Participants with non-zero OOPC in the laryngeal cancer group paid 49% lower OOPC than those with oropharyngeal cancers in adjusted analysis (p =.025). Conclusions: Patients undergoing treatment for HNC pay significant OOPC. These costs are highest during treatment and gradually decrease over time. OOPC vary by patient demographics, clinical factors, and, in particular, treatment modality.

Purpose: Internationally, there has been a move towards more recovery-oriented mental health policies for people living with mental illness, and some countries have included well-being as a population-level objective. In practice, these policy objectives can be difficult to achieve because of deeply rooted policy legacies, including a biomedical approach to care and the stigma associated with mental illness. The purpose of this paper is to investigate how interventions that operate outside the formal mental health system, such as recovery colleges (RCs), may advance these policy objectives more easily than efforts at broader system reform. Design/methodology/approach: This study conducted a scoping review to explore the features and context of RCs that make the model an attractive and feasible opportunity to advance a recovery and well-being agenda. Our research is motivated by the initial and growing adoption of RCs by the Canadian Mental Health Association. This paper applies the consolidated framework for implementation research to analyse features of the model and the context of its implementation in Canada. Findings: The RC’s educational approach, adaptability, coproduced nature and positioning outside the formal mental health system are key features that facilitate implementation without disrupting deeply entrenched policy legacies. Other facilitators in the Canadian context include the implementing organisation’s independence from government, its federated structure and the model’s alignment with national policy objectives. Originality/value: This paper highlights how interventions outside the formal mental healthcare system can promote stated recovery and well-being policy goals.

Background: Health systems are increasingly implementing policy-driven programs to incentivize performance using contracts, scorecards, rankings, rewards, and penalties. Studies of these “Performance Management” (PM) programs have identified unintended negative consequences. However, no single comprehensive typology of the negative and positive unintended consequences of PM in healthcare exists and most studies of unintended consequences were conducted in England or the United States. The aims of this study were: (1) To develop a comprehensive typology of unintended consequences of PM in healthcare, and (2) To describe multiple stakeholder perspectives of the unintended consequences of PM in cancer and renal care in Ontario, Canada. Methods: We conducted a rapid review of unintended consequences of PM in healthcare (n = 41 papers) to develop a typology of unintended consequences. We then conducted a secondary analysis of data from a qualitative study involving semi-structured interviews with 147 participants involved with or impacted by a PM system used to oversee 40 care delivery networks in Ontario, Canada. Participants included administrators and clinical leads from the networks and the government agency managing the PM system. We undertook a hybrid inductive and deductive coding approach using the typology we developed from the rapid review. Results: We present a comprehensive typology of 48 negative and positive unintended consequences of PM in healthcare, including five novel unintended consequences not previously identified or well-described in the literature. The typology is organized into two broad categories: unintended consequences on (1) organizations and providers and on (2) patients and patient care. The most common unintended consequences of PM identified in the literature were measure fixation, tunnel vision, and misrepresentation or gaming, while those most prominent in the qualitative data were administrative burden, insensitivity, reduced morale, and systemic dysfunction. We also found that unintended consequences of PM are often mutually reinforcing. Conclusions: Our comprehensive typology provides a common language for discourse on unintended consequences and supports systematic, comparable analyses of unintended consequences across PM regimes and healthcare systems. Healthcare policymakers and managers can use the results of this study to inform the (re-)design and implementation of evidence-informed PM programs.

Objective: Health care organizations monitor hundreds of performance indicators. It is unclear what processes and criteria organizations use to identify the indicators they use, who is involved in these processes, how performance targets are set, and what the impacts of these processes are. The purpose of this study is to synthesize international approaches to indicator selection and develop a standardized process framework. Methods: Using the PubMed and Web of Science search engines, a scoping review of peer reviewed and grey literature following PRISMA-ScR guidelines was conducted to identify documents describing indicator selection processes used by health systems. English-language papers from 11 countries published from 2010 to 2020 were included. Papers were thematically analyzed to develop a standardized process framework. Results: The review included 33 peer-reviewed papers and 11 grey-literature documents. While there are common practices used in health care to select indicators, no single standardized process framework for indicator selection exists. Arbitrary or incomplete indicator selection processes risk over-measurement, lack of alignment with strategic and operational goals, lack of support by endusers, and paralyzed decision-making ability. By consolidating international practices, we developed the 5-P indicator selection process framework to mitigate process risks and support high-quality indicator selection processes. Conclusion: The 5-P indicator selection process framework consists of five domains and 17 elements, and offers health care agencies a practical structure they can use to design indicator selection processes. The framework also provides researchers with a basis by which the implementation of these processes may be evaluated.

Purpose: The number of older cancer survivors is growing rapidly and expected to double through the next decade. Survivors can face challenges from treatment as well as other co-morbid conditions which may influence quality of living and generate distress. Understanding more about factors influencing whether older cancer survivors receive the help they desire is important for cancer program planning. The purpose of this analysis was to understand relationships between income and emotional/practical concerns, help-seeking experiences and unmet needs of adults 65+ years one to three years following cancer treatment. Materials and Methods: A survey was conducted with randomly selected Canadian cancer survivors about their survivorship care. Drawing from these publicly available data, this secondary analysis examines prevalence of concerns, help-seeking, receipt of help, reasons for not seeking help, responses to information questions, and overall unmet needs for trends across income groups. Results: 7975 respondents 65+ years responded, of which the 5891 (73.9%) indicating annual household income were analyzed. Over 80% responded to questions regarding emotional/practical concerns following treatment with the largest proportions reporting emotional concerns for anxiety/fear of cancer returning (63%) and depression (49%), and practical concerns regarding transportation for appointments (33%) and paying healthcare bills (31%). Individuals with household incomes <$25,000 reported higher levels of concern than other income groups and higher proportions sought assistance for their concerns. Across income levels, 20% reported difficulty finding assistance to address their concerns. Discussion: Older cancer survivors across all income categories reported emotional/practical concerns, lack of information about these issues, and unmet needs regarding both emotional and practical concerns. Many encountered challenges obtaining help with those in lower income categories more severely affected despite Canada's universal health care system. Financial burden ought to be assessed with older survivors on an on-going basis to ensure relevant intervention.

Purpose: Understanding how patients and families experience, respond to, and cope with the financial burden associated with cancer could assist in identifying future research priorities and developing relevant interventions to assist patients and families facing financial hardship. This systematic review offers a synthesis of the qualitative evidence on cancer-related financial toxicity from the perspective of patients and/or informal caregivers in publicly funded healthcare systems where it might be expected that financial protection would be strongest. Methods: Articles published between January 1, 2005, and March 7, 2019, describing financial burden experienced by cancer patients and/or informal caregivers were identified using OVID MEDLINE Embase and PsychInfo, CINAHL, Business Source Complete, and EconLit databases. English language, peer-reviewed qualitative papers describing studies conducted in countries with predominantly publicly funded healthcare systems were eligible. Quality appraisal was conducted using CASP Quality Appraisal Checklist. Narrative synthesis was completed with extracted data and themes identified inductively by all team members. Results: Twelve articles were identified as eligible. Articles reported on 10 studies conducted in Australia (n = 2), Canada (n = 2), England (n = 3), and Ireland (n = 3). The papers illustrate the complexity and multifaceted nature of experiencing financial hardship following a cancer diagnosis. Each contributes to the whole picture, providing different viewpoints regarding various and diverse forms of financial hardship, the process of confronting financial challenges, working to overcome difficulties, and coping with the resulting impacts. Synthesis of the studies suggested five themes: household and medical costs are increased, financial resources are reduced, financial change and financial hardship vary, financial hardship has many consequences, various mitigation strategies are used. Conclusion: Cancer patients and their families can experience a broad range of impacts when they are facing and coping with financial toxicity. Consistent gaps in support highlight that strategies to mitigate financial effects related to travel, accommodation, medications, family support, and income replacement are needed for many patients and families even in the context of publicly funded healthcare systems. Implications for Cancer Survivors: Survivors need to be informed early in their cancer experience about the potential financial burden associated with cancer treatment and its impact on survivors and their family members.

Traditionally, economic evaluations are based on clinical trials with well-defined patient populations that exclude many patient types. By contrast, studies that incorporate general patient populations end up including those in lower income categories, some of whom have significant financial burdens (often described as financial toxicity) related to their care. Consideration of these patient burdens when examining the incremental cost-effectiveness of newer treatments from a clinical trial perspective can result in differing conclusions regarding cost-effectiveness. The challenge is to reliably assess the link between financial toxicity, quality of life and potential decisions to forego or delay care. It is also well-documented that these financial effects are not evenly distributed across populations, with those with low income and of black or Latino decent being most affected. There is a paucity of literature in this space, but some of the early work has suggested that for lung, breast, colorectal and ovarian cancers there are poorer quality-of-life scores and/or shorter overall survival for those experiencing financial toxicity. Hence, we may see both a lower quality of life and a shorter duration of life for these populations. If this is the case, additional considerations include: are the benefits of newer, more-expensive treatment strategies muted by the lack of adherence to these newer treatments due to financial concerns, and, if true, can these effects be effectively quantified as “real-world” outcomes? This rapid review examines these possibilities and the steps that may be required to examine this reliably.

Designing within complex service systems implies navigating across a plurality of norms and beliefs that multiple stakeholder groups uphold, designers included. Transformational processes may be challenged by minimum, moderate, or extensive conflict depending on the centrality or compatibility of competing logics. This article reflects on how the complexity inherent in higher level institutional orders of society can support or inhibit the potential of co-design in complex systems, particularly in the public sector. Using the context of public mental healthcare transformation as a backdrop, we identified and reflected on four predominant logics: the logic of state; the logic of market; the logic of profession; and the logic of community. We then developed a set of tools to support reflexivity—the excel Logic Multiplicity Workbook and the Layers of Logics Map—that can be used to take project logics snapshots to represent the perceived strength of project stakeholder logics at the micro, meso, and macro levels and their centrality and compatibility. Three co-design project examples were used to retrospectively develop and refine these tools, and support the process of making explicit the role of competing logics in project challenges or triumphs. While we acknowledge that logics are often highly institutionalized and difficult to become aware of, we value as fundamental the creation of tools to better enable designers to consciously adopt adequate strategies to navigate this complexity.

Objective: Although vaccines are one of the most cost-effective, low-risk healthcare approaches that save thousands of lives every year, paradoxical fear about vaccine safety is a major roadblock for achieving widespread vaccination coverage. The objective of this study is to change public perception of vaccine safety by presenting real-world incidence of adverse events following immunization (AEFIs). Methods: In this study, we used Canadian post-market adverse events data to estimate the real-world risk of AEFI and benchmarked them against five commonly used drug types—ACE inhibitors, beta2 adrenergic receptors, penicillins, proton pump inhibitors, and HMG-CoA reductase inhibitors. Results: Our analysis shows that post-market AEFIs are rare, and vaccination generally carries a significantly lower risk compared to some commonly used medicinal product types. Conclusion: Despite some limitations with using post-trial adverse events data, we believe that the evidence presented in this study, especially the comparative risk analysis between vaccines and medicinal products, when communicated through proper channels, can help vaccine-hesitant individuals overcome their perceived safety concerns with regard to vaccines.

The objective of this study was to explore the relationship among income and emotional/practical concerns, help-seeking and unmet needs for cancer survivors aged 18 to 64 years one to three years after treatment. A cross-sectional survey was mailed in 2016 to 40,790 survivors randomly selected from 10 Canadian provincial cancer registries. Thirty-three percent responded. A trend analysis was conducted for survivors most likely to be in the workforce exploring the relationship across four income levels and emotional/practical concerns, whether help was sought for identified concerns, and whether help was received. A total of 4,264 respondents, aged 18–64, provided useable data with breast (34.4%) and colo-rectal (15.0%) accounting for the primary cancer type and 32.0% reporting annual household incomes of <$50,000. More than 94% of respondents indicated having emotional or practical concerns. Between one-third and one-half of the respondents sought help for their concerns and, of those, between one-third and one-half experienced difficulty finding help or did not obtain assistance. Significant trends across income categories indicated greater percentages of those in lower income categories experienced emotional and practical concerns, rated their concerns as ‘big’, sought help, and had difficulty finding help to address their concerns. Clearly adult cancer survivors experience emotional and practical concerns. Healthcare professionals have important roles monitoring these concerns and connecting those who desire help to relevant services. Opportunities should be given to individuals, regardless of income level, to indicate if they have concerns and if they would like assistance.

Objective: To assess the impacts of multiple chronic conditions (MCC) and frailty on 30-day post-discharge readmission and mortality among older patients with delayed discharge. Data source/extraction: We used a retrospective cohort of older patients in the Discharge Abstract Database (DAD) between 2004 and 2017 in Ontario, Canada. We extracted data on patients aged ? 65 who experienced delayed discharge during hospitalization (N = 353,106). Study design: We measured MCC and frailty using the Elixhauser Comorbidity Index (ECI) and the Hospital Frailty Risk Score (HFRS), respectively. We used multinomial logistic regression to model the main and interactive effects of MCC and frailty on the adverse outcomes. Principal findings: After adjusting for sex, discharge destination, urban/rural residency, wait time for alternative care, and socioeconomic status, the coexistence of MCC and high frailty increased the relative risk of 30-day mortality and readmission when compared to the references group, i.e., non-MCC patients with low-to-moderate frailty. Conclusions: Multimorbidity and frailty each provide unique information about adverse outcomes among older patients with delayed discharge but are most informative when examined in unison. Implications for health policy: To minimize the risk of adverse outcomes among older delayed discharge patients, discharge planning must be tailored to their concurrent multimorbidity and frailty status.

Purpose: This paper examines how “quality” was framed in the design and implementation of a policy to reform hospital funding and associated care delivery. The aims of the study were: (1) To describe how government policy-makers who designed the policy and managers and clinicians who implemented the policy framed the concept of “quality” and (2) To explore how frames of quality and the framing process may have influenced policy implementation. Design/methodology/approach: The authors conducted a secondary analysis of data from a qualitative case study involving semi-structured interviews with 45 purposefully selected key informants involved in the design and implementation of the quality-based procedures policy in Ontario, Canada. The authors used framing theory to inform coding and analysis. Findings: The authors found that policy designers perpetuated a broader frame of quality than implementers who held more narrow frames of quality. Frame divergence was further characterized by how informants framed the relationship between clinical and financial domains of quality. Several environmental and organizational factors influenced how quality was framed by implementers. Originality/value: As health systems around the world increasingly implement new models of governance and financing to strengthen quality of care, there is a need to consider how “quality” is framed in the context of these policies and with what effect. This is the first framing analysis of “quality” in health policy.

Introduction Medical advancements are slow to reach the patient bedside due to issues with knowledge translation from preclinical studies. Multi-laboratory preclinical studies are a promising strategy for addressing the methodological deficiencies that weaken the translational impact of single laboratory findings. However, multi-laboratory preclinical studies are rare and difficult, requiring strong collaboration to plan and execute a shared protocol. In multiteam systems such as these, collaboration is enhanced when members have cohesive ways of thinking about their goals and how to achieve them-that is, when they have "shared mental models". In this research project, we will examine how members of Canada's first multi-laboratory preclinical study build shared mental models and collaborate in the execution of their study. Methods Six independent labs in Canada will conduct a preclinical study using a common protocol. To investigate mental models and collaboration in this multiteam system we will conduct a longitudinal qualitative study involving interviews at four time points, team observation, and document analysis. We will analyze interview transcripts using deductive coding to produce a matrix analysis of mental model content over time and inductive coding to produce a thematic analysis of members' experiences of collaboration over time. We will also triangulate data sources to "tell the story"of teamwork, capturing events and contextual information that explain changes in mental models and collaboration over time. Discussion This study will be one of the most comprehensive longitudinal analyses of a real-world multiteam system, and the first within a preclinical laboratory setting. The results will contribute to our understanding of collaboration in multiteam systems, an organizational form increasingly used to tackle complex scientific and social problems. The results will also inform the implementation of future multi-laboratory preclinical studies, enhancing the likelihood of effective collaboration and improved 'bench to bedside' translation.

Over the last 15 years, there has been a trend in Canada to centralise the provision of health services that were previously administratively and fiscally decentralised. Canadian policy rhetoric on centralisation often identifies improved innovation as an anticipated outcome. This paper challenges the assumed relationship between centralisation and innovation. We incorporate evidence from the management literature into the debate on the structure of health systems to explore the effects that centralisation is likely to have on innovation in health systems. The findings of this paper will be of interest to international policymakers, who are currently grappling with the prospect of maintaining a decentralised approach or adopting a more centralised health system structure in the future.

How does leadership emerge and function when multiple health care organizations come together to form a network? In this qualitative comparative case study, we draw on distributed leadership theory to examine the leadership practices that manifested during the implementation of three coordinated care networks. Thirty leaders and care providers participated in semistructured interviews. Interview data were inductively analyzed using thematic analysis. Although established in response to the same policy initiative, each case differed in its leadership approach and implementation strategy. We found that manifestation of distributed leadership was contingent on the presence of an individual leader who acted as a unifying force across their respective network. Our findings suggest that policies to encourage the development of interorganizational networks should include sufficient resources to support an individual leader who enables distributed leadership.

Background: Patient complexity among older delayed-discharge patients complicates discharge planning, resulting in a higher rate of adverse outcomes, such as readmission and mortality. Early prediction of multimorbidity, as a common indicator of patient complexity, can support proactive discharge planning by prioritizing complex patients and reducing healthcare inefficiencies. Objective: We set out to accomplish the following two objectives: 1) to examine the predictability of three common multimorbidity indices, including Charlson–Deyo Comorbidity Index (CDCI), the Elixhauser Comorbidity Index (ECI), and the Functional Comorbidity Index (FCI) using machine learning (ML), and 2) to assess the prognostic power of these indices in predicting 30-day readmission and mortality. Materials and Methods: We used data including 163,983 observations of patients aged 65 and older who experienced discharge delay in Ontario, Canada, during 2004 – 2017. First, we utilized various classification ML algorithms, including classification and regression trees, random forests, bagging trees, extreme gradient boosting, and logistic regression, to predict the multimorbidity status based on CDCI, ECI, and FCI. Second, we used adjusted multinomial logistic regression to assess the association between multimorbidity indices and the patient-important outcomes, including 30-day mortality and readmission. Results: For all ML algorithms and regardless of the predictive performance criteria, better predictions were established for the CDCI compared with the ECI and FCI. Remarkably, the most predictable multimorbidity index (i.e., CDCI with Area Under the Receiver Operating Characteristic Curve = 0.80, 95% CI = 0.79 – 0.81) also offered the highest prognostications regarding adverse events (RRRmortality = 3.44, 95% CI = 3.21 – 3.68 and RRRreadmission = 1.36, 95% CI = 1.31 – 1.40). Conclusions: Our findings highlight the feasibility and utility of predicting multimorbidity status using ML algorithms, resulting in the early detection of patients at risk of mortality and readmission. This can support proactive triage and decision-making about staffing and resource allocation, with the goal of optimizing patient outcomes and facilitating an upstream and informed discharge process through prioritizing complex patients for discharge and providing patient-centered care.

Many medical services lack robust evidence of effectiveness and may therefore be considered “unnecessary” care. Proactively withdrawing resources from, or de-funding, such services and redirecting the savings to services that have proven effectiveness would enhance overall health system performance. Despite this, governments have been reluctant to discontinue funding of services once funding is in place. The focus of this study is to understand how the framing of an issue or problem influences government decision-making related to de-funding of medical services. To achieve this, a framework describing how problem frames, or explanatory naratives, influence government policy decisions was developed and applied to actual cases. The two cases selected were the Ontario government’s decisions to de-fund the drug Oxycontin and blood glucose test strips used by patients with diabetes. A qualitative content analysis of public discourse (political debate and media coverage) surrounding these two resource withdrawal examples was conducted and described using the framework. In the framework, government decision-making is a partial reflection of the visibility of the policy issue and complexity of the causal story told within a problem frame. By applying this framework and considering these two key characteristics of problem frames, we can better understand, and possibly predict, the shape and timing of government policy decisions to withdraw resources from medical services.

When it comes to engaging vulnerable populations in co-production, power imbalances across stakeholder groups can create methodological challenges. A thoughtful, planned, and responsive approach is needed to prepare vulnerable participants to fully engage in co-production processes. Data from key informant interviews (n = 16) and author reflections on three Experience-based co-design (EBCD) studies involving youth (16–25 years) with mental health issues in Ontario Canada, were analyzed. Four overarching themes and 12 subthemes were identified, and heuristic tools (a relational COMPASS and MAPS directions) were developed to assist researchers in navigating vulnerability, power and relational issues in co-production processes involving vulnerable populations.

Guidelines and legislation prescribe how hospitals should conduct critical incident disclosures with patients. However, variation in secondary disclosure implementation can occur. Using the Consolidated Framework for Implementation Research, this qualitative multiplecase study explored the factors that impact Ontario hospitals' secondary disclosure of critical incidents. The study concludes that while hospitals generally implement guidelines consistently, complex environments and differing professional backgrounds lead to variations. Consequently, hospitals should address timing delays, improve documentation and enhance support to clinicians who conduct the disclosures. Policy makers should consider the benefits and challenges of written disclosure, and offering patients a choice in the setting where disclosure occurs, as potential improvements.

Background: The use of information and communication technology (ICT) has tremendous potential to enhance communication among physicians, leading to improvements in service delivery. However, the protection of health information in digital/electronic format is an ongoing concern. Objective: The purpose of this study was to examine guidance for the protection of health information when using ICT from all 10 of Canada’s provincial regulatory colleges for physicians and to discuss the potential policy and service delivery implications. Method: A search of the regulatory college websites was conducted, followed by a document analysis (content and thematic). Results: The college website search identified 522 documents; 12 of these documents (from 8 of the 10 colleges) met the study criteria. These documents were notable for the considerable variation in the scope and detail of guidance provided across the colleges. Conclusion: While the federal–provincial division of powers in Canada enables different jurisdictional approaches to health service delivery and, thus, opportunities for policy learning, this governing structure may also contribute to a lack of incentive for collaboration, leading to an absence of standardised guidance for health information protection when using ICT. This, in turn, may result in unequal and inequitable protection of health information across the provinces. Therefore, a macro-level approach to policy development in this area may hold the greatest promise for enhancing the protection of health information and doing so in a more standardised manner in countries with federal systems of governance.

Objective: This article offers an overall summary of the current situation concerning cancer-related financial toxicity from the perspective of Canadian patents and survivors. The focus is on describing the financial effects experienced by the patient and survivor and family, which they attribute to the cancer diagnosis, treatment, and other factors that contribute to their financial distress. Data Sources: The information was drawn from peer-reviewed research literature generated by Canadian researchers regarding out-of-pockets costs, loss of income, and the impact of financial burden over the past 2 decades. Priority was given to understanding what patients and survivors and caregivers perceived as financial burden and distress (stress and strain). Conclusion: Canadian patients and family members reported financial burden (out-of-pocket costs, loss of income) and financial distress following the diagnosis and treatment of cancer. Heightened distress from financial burden was reported between 38% and 71% within various samples. Patients and survivors indicated the distress and challenges managing the financial situation had a profound impact on their everyday living and quality of life. Many were surprised by the increased costs, given the county's universal health care system. Baseline financial status, competency in managing finances, and lost wages were significant factors in the distress experienced by patients and family members. Implications for Nursing Practice: Oncology nurses need to be aware of financial toxicity as a potential side effect of cancer. It may emerge during treatment but can extend well beyond the end of treatment. Early screening and assessment followed by dialogue about the potential impact with patients and family members is important. Routine monitoring of distress related to financial toxicity should be part of ongoing care with appropriate referral to relevant recourses as needed.

Objective: To seek understanding of financial burden from the perspective of cancer patients, in a largely publicly funded health care system, about the impacts of financial hardship on their lives. Methods: A qualitative descriptive analysis was completed for comments written in response to an open-ended, free-text item on a pan-Canadian survey about costs incurred during cancer treatment and follow-up and the impact of financial difficulties. Results: A total 378 of the 901 survey respondents provided comments about their financial situations during cancer treatment. Forty percent of those individuals indicated experiencing financial struggles and resulting emotional distress. Themes were identified as follows: cost incurred, reduced income and reserves, impact of costs and reduced financial income/reserve, and managing financial distress. Conclusion: Even within a universal health care system, a significant proportion of cancer patients experienced financial struggle and resulting emotional distress. Practice implications: Regular monitoring of financial and emotional distress and its sources can facilitate the identification of those who are experiencing financial difficulty and the provision of appropriate interventions.

Introduction: Individual acupuncture (AP) is the gold standard method of AP delivery for cancer-related pain; however, costs can be prohibitive. Group AP allows four to six patients to be treated in a single session. This study sought to examine the cost-utility of group AP compared with individual AP from a patient perspective. Materials and Methods: Effectiveness and cost data from a noninferiority randomized trial of group versus individual AP for cancer-related pain were used. In the trial, 74 patients were randomly assigned to individual or group AP treatments twice per week for 6 weeks. The EuroQol five-dimension five level questionnaire (EQ-5D-5L) was used to assess health-related quality of life, and the EQ-5D Utility Index was used as a composite measure constituted of five domains (mobility, self-care, usual activities, anxiety-depression, and pain-discomfort). Linear mixed models were used to compare the change in EQ-5D-5L states pre-post intervention between the two arms. A cost-utility analysis was performed in terms of the incremental costs per additional quality-Adjusted life year (QALY) gained. Results: Group AP participants experienced more significant relief in the pain-discomfort subscale of the EQ-5D-5L measure compared with individual AP participants (group × time, F = 6.18; p = 0.02). The effect size on pain-discomfort for group AP (d = 0.80) was higher than that of individual AP (d = 0.34). There were no significant differences between the two study arms for other subscales of the EQ-5D-5L over time. QALYs at 6 weeks were slightly higher for group AP (0.020) compared with individual AP (0.007) leading to an incremental QALY gained by the group arm of 0.013, but this difference was not statistically significant (p = 0.07). The cost of delivering AP treatment for the group arm over 6 weeks ($201.25) was nearly half of the individual arm ($400). Conclusions: Group AP was superior to individual AP in cancer patients. These findings have implications for the use of group AP in low-resource settings and in health care systems where AP for cancer patients is not covered by public health insurance. ClinicalTrials.gov (NCT03641222). Registered July 10, 2018-Retrospectively registered, https://clinicaltrials.gov/ct2/show/study/NCT03641222

Goal: To determine patient-reported financial and family burden associated with treatment of cancer in the previous 28 days across Canada. Methods: A self-administered questionnaire (P-SAFE v7.2.4) was completed by 901 patients with cancer from twenty cancer centres nationally (344 breast, 183 colorectal, 158 lung, 216 prostate) measuring direct and indirect costs related to cancer treatment and foregone care. Monthly self-reported out-of-pocket-costs (OOPCs) included drugs, homecare, homemaking, complementary/ alternative medicines, vitamins/supplements, family care, accommodations, devices, and “other” costs. Travel and parking costs were captured separately. Patients indicated if OOPC, travel, parking, and lost income were a financial burden. Results: Mean 28-day OOPCs were CA$518 (US Purchase Price Parity [PPP] $416), plus CA$179 (US PPP $144) for travel and CA$84 (US PPP $67) for parking. Patients self-reporting high financial burden had total OOPCs (33%), of CA$961 (US PPP $772), while low-burden participants (66%) had OOPCs of CA$300 (US PPP $241). “Worst burden” respondents spent a mean of 50.7% of their monthly income on OOPCs (median 20.8%). Among the 29.4% who took time off work, patients averaged 18.0 days off. Among the 26.0% of patients whose caregivers took time off work, caregivers averaged 11.5 days off. Lastly, 41% of all patients had to reduce spending. Fifty-two per cent of those who reduced spending were families earning < CA$50,000/year. Conclusions: In our Canadian sample, high levels of financial burden exist for 33% of patients, and the severity of burden is higher for those with lower household incomes.

Table 5 in the original missed “minus” signs in line 1 (age), line 2-6 (income). The correct table is shown below: The original article has been corrected.

PURPOSE OF REVIEW: Research demonstrates that patients and their families often carry a good portion of the economic burden during and following cancer treatment, frequently resulting in implications for access to care. This rapid review summarizes how this knowledge has evolved in recent years. RECENT FINDINGS: The number of articles on patient financial burden is increasing, suggesting awareness about the growing impact of economic burden on patients. This is particularly evident when discussing out-of-pocket costs, and lost work for patients/caregivers. However, there is an increasing focus on 'foregone care' and 'financial distress'. Additionally, emerging literature is examining policies and approaches to screen and/or mitigate these patient financial risks, thereby improving access to care. There is also increasing focus on populations that shoulder a disproportionate financial burden, including ethnic minorities (blacks, Asians, Latinos) as well as those with lower socioeconomic status. Additionally, there is evidence that this burden also affects the middle class. SUMMARY: As healthcare budgets become stretched, especially during a pandemic, supportive programs benefiting the less fortunate often shrink, which impacts access to care. The emerging research on strategies with government or institutions to mitigate these burdens and access issues are both welcome and needed.

Background: The prediction of the real-world cost of adverse drug reactions (ADRs) has historically relied on the data from randomized controlled trials (RCT). However, trial conditions do not always reflect the real-world applications of pharmaceutical products; hence, they may not accurately portray the actual risks of ADRs associated with them. The objective of this study is two-fold: (a) demonstrate whether and how post-market and RCT ADR data could lead to different conclusions for a set of drugs of interest, and (b) evaluate the potential economic impact of the post-market ADRs associated with those drugs. Methods: We selected two TNF-? inhibitor biologics, infliximab and adalimumab, and used the Canada Vigilance Adverse Reaction (CVAR) online database as a source of post-market ADR data. Adverse reaction data from RCTs were obtained from ClinicalTrials.gov. Direct healthcare costs associated with adverse reactions were obtained from Canadian Institute for Health Information (CIHI) or Interactive Health Data Application, Alberta. We calculated post-market ADR rates and compared them with those found in the randomized controlled trials of these two drugs. Using the post-market data, we estimated the costs associated with serious ADRs from three perspectives: patient, health system, and societal. Results: For both drugs, the post-market and RCT data exhibited significantly different adverse reaction rates for several different clinical outcomes. As a general trend, more serious adverse reactions, such as death, appeared to have a higher rate in post-market applications compared to the clinical trials. The estimated average annual economic burden of the severe adverse reaction outcomes ranged from $10 million to $20 million for infliximab and $6 million to $19 million for adalimumab. Conclusions: The frequency and severity of post-market adverse reactions associated with pharmaceutical products may significantly differ from those detected in the clinical trials. Despite possible methodological differences, this is due to the fact that post-market data reflect the externalities of the real-world that are absent in RCTs. The economic burden of adverse reactions can be substantial, and the cost calculated using post-market data is better reflective of the cost of ADRs in the real-world.

Introduction: Patients with advanced Chronic Kidney Disease (CKD) have complex health needs, and thus require care that is coordinated across professionals and organizations. This study aimed to describe the extent of coordinated care delivery for patients with advanced CKD from the perspectives of both patients and healthcare professionals. Methods: The Coordination Scale of the Patient Assessment of Chronic Illness Care (PACIC-26) survey was administered to a random sample of 14,257 patients on maintenance dialysis or receiving care in end-stage kidney disease preparation clinics in Ontario, Canada. A five-item survey was administered to 596 multidisciplinary nephrology professionals. Results: Among the 1,925 patient respondents, 67% reported they had been referred to an allied health professional; 19% had been encouraged to attend programs in the community; and 34% had been told how their visits with other types of doctors helped their treatment (% reporting “always” or “most of the time”). Patient responses were significantly different by treatment modality/setting, but not by gender or geographic location of treatment facility. Among the 276 professional respondents, 37% reported their patients’ care was well-coordinated across settings; 56% reported participating in interdisciplinary care planning discussions; and 53% reported they are aware of appropriate home and community services to support their patients (% reporting “always” or “most of the time”). Conclusion: The results suggest that care for patients with advanced CKD in Ontario is not consistently coordinated. Healthcare professionals may enhance patient perceptions of coordinated care through explicit communication with patients about how the professionals they see and treatments or services they receive influence their overall health and well-being. At a systems level, there is a need to improve professional awareness of and linkages to home-and community-based services.

Objective To evaluate an intervention aimed at building capacity to deliver palliative care in primary care settings. Design The INTEGRATE Project was a 3-year pilot project involving interprofessional palliative care education and an integrated care model to promote early identification and support of patients with palliative care needs. A concurrent mixed-methods evaluation was conducted using descriptive data, provider surveys before and after implementation, and interviews with providers and managers. Setting Four primary care practices in Ontario. Participants All providers in each practice were invited to participate. Providers used the “surprise question“as a prompt to determine patient eligibility for inclusion. Main outcome measures Provider attitudes toward and confidence in providing palliative care, use of palliative care tools, delivery of palliative care, and perceived barriers to delivering palliative care. Results A total of 294 patients were identified for early initiation of palliative care, most of whom had multiple comorbid conditions. Results demonstrated improvement in provider confidence to deliver palliative care (30% mean increase, P<.05) and self-reported use of palliative care tools and services (25% mean increase, P<.05). There was substantial variation across practices regarding the percentage of patients identified using the surprise question (0.2% to 1.5%), the number of advance care planning conversations initiated (50% to 90%), and mean time to conversation (13 to 76 days). This variation is attributable, in part, to contextual differences across practices. Conclusion A standardized model for the early introduction of palliative care to patients can be integrated into the routine practice of primary care practitioners with appropriate training and support. Additional research is needed to understand the practice factors that contribute to the success of palliative care interventions in primary care and to examine patient outcomes.

Background: Despite increasing interest in joint research priority-setting, few studies engage end-user groups in setting research priorities at the intersection of the healthcare and management disciplines. With health systems increasingly establishing performance management programmes to account for and incentivize performance, it is important to conduct research that is actionable by the end-users involved with or impacted by these programmes. The aim of this study was to co-design a research agenda on healthcare performance management with and for end-users in a specific jurisdictional and policy context. Methods: We undertook a rapid review of the literature on healthcare performance management (n = 115) and conducted end-user interviews (n = 156) that included a quantitative ranking exercise to prioritize five directions for future research. The quantitative rankings were analysed using four methods: mean, median, frequency ranked first or second, and frequency ranked fifth. The interview transcripts were coded inductively and analysed thematically to identify common patterns across participant responses. Results: Seventy-three individual and group interviews were conducted with 156 end-users representing diverse end-user groups, including administrators, clinicians and patients, among others. End-user groups prioritized different research directions based on their experiences and information needs. Despite this variation, the research direction on motivating performance improvement had the highest overall mean ranking and was most often ranked first or second and least often ranked fifth. The research direction was modified based on end-user feedback to include an explicit behaviour change lens and stronger consideration for the influence of context. Conclusions: Joint research priority-setting resulted in a practice-driven research agenda capable of generating results to inform policy and management practice in healthcare as well as contribute to the literature. The results suggest that end-users are keen to open the “black box” of performance management to explore more nuanced questions beyond “does performance management work?” End-users want to know how, when and why performance management contributes to behaviour change (or fails to) among front-line care providers.

Sepsis is a major public and global health concern. Every hour of delay in detecting sepsis significantly increases the risk of death, highlighting the importance of accurately predicting sepsis in a timely manner. A growing body of literature has examined developing new or improving the existing machine learning (ML) approaches for timely and accurate predictions of sepsis. This study contributes to this literature by providing clear insights regarding the role of the recency and adequacy of historical information in predicting sepsis using ML. To this end, we implemented a deep learning model using a bidirectional long short-term memory (BiLSTM) algorithm and compared it with six other ML algorithms based on numerous combinations of the prediction horizons (to capture information recency) and observation windows (to capture information adequacy) using different measures of predictive performance. Our results indicated that the BiLSTM algorithm outperforms all other ML algorithms and provides a great separability of the predicted risk of sepsis among septic versus non-septic patients. Moreover, decreasing the prediction horizon (in favor of information recency) always boosts the predictive performance; however, the impact of expanding the observation window (in favor of information adequacy) depends on the prediction horizon and the purpose of prediction. More specifically, when the prediction is responsive to the positive label (i.e., Sepsis), increasing historical data improves the predictive performance when the prediction horizon is short-moderate.

Background: Deeply divided ideological positions challenge collaboration when engaging youth with mental disorders, caregivers and providers in mental health research. The integrative dynamics (ID) approach can restructure relationships and overcome ‘us vs them’ thinking. Objective: To assess the extent to which an experience-based co-design (EBCD) approach to patient and family engagement in mental health research aligned with ID processes. Methods: A retrospective case study of EBCD data in which transitional-aged youth (n = 12), caregivers (n = 8) and providers (n = 10) co-designed prototypes to improve transitions from child to adult services. Transcripts from focus groups and a co-design event, co-designed prototypes, the resulting model, evaluation interviews and author reflections were coded deductively based on core ID concepts, while allowing for emergent themes. Analysis was based on pattern matching. Triangulation across data sources, research team, and youth and caregiver reflections enhanced rigour. Findings: The EBCD focus group discussions of touchpoints in experiences aligned with ID processes of acknowledging the past, by revealing the perceived identity mythos of each group, and allowing expression of and working through emotional pain. These ID processes were briefly revisited in the co-design event, where the focus was on the remaining ID processes: building cross-cutting connections and reconfiguring relationships. The staged EBCD approach may facilitate ID, by working within one's own perspective prior to all perspectives working together in co-design. Conclusion: Researchers can augment patient engagement approaches by applying ID principles with staged integration of groups to improve relations in mental health systems, and EBCD shows promise to operationalize this.