Suchergebnisse

IntroductionResearch has demonstrated that primary care providers can safely and effectively provide follow-up care after a person has received treatment for cancer. Yet, discharge to primary care after cancer treatment is variable, despite the fact that cancer systems are challenged to provide follow-up care given constrained cancer specialist resources.
Objectives and ApproachTo inform cancer system planning, we examined (1) cancer centre routine follow-up (CC-FUP) care for prevalent cancer types and (2) changes in CC-FUP over time. From the Nova Scotia Cancer Registry, we identified all persons diagnosed in Nova Scotia, Canada, with an invasive breast, colorectal, gynecological, or prostate cancer between 01/01/2006 and 31/12/2013. We linked this dataset to cancer centre/clinic data and identified a non-metastatic cancer survivor cohort (n=12,267). Descriptive statistics were computed to describe patterns of care. Negative binomial regression was used to examine changes over time for both CC-FUP and all cancer centre visits, adjusting for other covariates.
ResultsNearly half of survivors (48.4\%) had at least one CC-FUP visit, which varied by disease site (range: 30.2-62.4\%). Variation existed across providers, with six oncologists providing 34.7\% of the CC-FUP visits to the study population. Year of diagnosis was associated with receipt of CC-FUP care, with each successive calendar year associated with an 8\% increase in CC-FUP visits (IRR=1.08, 95\%CI=1.07-1.10). Similarly, each successive calendar year was associated with a 14\% increase in all cancer centre visits (IRR=1.14, 95\%CI=1.13-1.15). Results were shared with cancer system decision-makers at regular intervals to inform ongoing analyses.
Conclusion/ImplicationsBoth the number of CC-FUP visits and all visits increased over time, with the latter at a greater rate. The increases were much higher than assumed by cancer system decision makers (2\% increase per year) for resource planning, demonstrating the value of population-based administrative data to informing health service planning.

IntroductionThe use of administrative health data can generate knowledge to improve the delivery and outcomes of health care. Yet, the sharing and use of secondary health data presents concerns given these data were not collected for health research purposes. The sharing of patient-level health data across Canadian provinces is uncommon.
Objectives and ApproachThe Maritime SPOR SUPPORT Unit (a patient-oriented research unit serving the three Canadian Maritime Provinces of New Brunswick, Nova Scotia, and Prince Edward Island) struck a Working Group to develop a conceptual framework for the interprovincial sharing of secondary health data for research purposes. Membership comprised a researcher, two privacy managers/officers, and a manager of research ethics. The framework sought to: (1) facilitate researchers' understanding of the foundational elements (legal/ethical) of interprovincial data sharing for health research; and (2) identify challenges and opportunities for improving sharing of data across the Maritime Provinces to support patient-oriented research.
ResultsIn all three Maritime provinces, de-identified personal health information may be used for approved health research purposes, with each province having its own data holdings and repositories. Applying the applicable governance principles and regulations (i.e., the ethical governance of research involving human subjects and the legal governance of health information) and drawing on best practices nationally and internationally, a framework was developed to incorporate and address the various aspects of sharing and using health data across provinces for the purposes of health research. The resultant framework discusses when and how the legal and ethical frameworks apply, the de-identification of data, degrees of data sharing, and information governance. It also identifies challenges and opportunities to moving forward with interprovincial data sharing.
Conclusion/ImplicationsDevelopment of this framework was the first phase of a multi-phase approach to move towards improved interprovincial data sharing for patient-oriented research. Cross-provincial sharing and linkage of data can lead to comprehensive, cost-effective, and multi-disciplinary research that benefits patients, the health system, and the public at large.

ObjectivesTo link population-based survey data to routinely collected administrative health data to enable investigation of how cancer survivors' ongoing physical, emotional, and practical needs and experiences after completing cancer treatment impact their healthcare utilization, including discharge from oncology to primary care.
ApproachThe "Cancer Transitions Survey" is a population-based survey examining survivors' experiences and needs after completing cancer treatment. The survey was administered by the Nova Scotia Cancer Registry (NSCR) as part of a national study, the largest of its kind in Canada. Respondents included Nova Scotian survivors of breast, melanoma, colorectal, prostate, hematologic, and young adult cancers who were 1-3 years after treatment. Survey responses were linked to cancer registry, physicians' claims, hospitalization, and ambulatory care data. The data linkage provided a full four years of healthcare utilization data for each cancer survivor, beginning one year after their cancer diagnosis.
Results1557 survivors responded to the survey and subsequently had their data linked. Collectively, breast, colorectal, and prostate cancer survivors represented 78.5% of survey respondents. Most respondents (65.3%) were 65 years of age or older and 69.8% had an existing co-morbid condition. Regression analyses are now being conducted to investigate whether the type and magnitude of post-treatment care needs, and the interventions (services and supports) received, impact health care utilization in the survivorship period, including discharge to primary care.
ConclusionThis study represents a unique opportunity to link data unavailable in administrative health data: namely, self-reported needs and use of non-physician services and supports (e.g., support groups, counselling). As such, this dataset permits investigation of healthcare utilization and patterns of care that cannot be accomplished using administrative health data alone.

IntroductionIn Canada, most provinces have established administrative health data repositories to facilitate access to these data for research. Anecdotally, researchers have described delays and substantial inter-provincial variations in the timeliness of data access approvals and receipt of data. Currently, the reasons for these delays and variations in timeliness are not well understood. This paper provides a study protocol for (1) identifying the factors affecting access to administrative health data for research within select Canadian provinces, and (2) comparing factors across provinces to assess whether and how they contribute to inter-provincial variations in access to administrative health data for research.
MethodsA qualitative, multiple-case study research design will be used. Three cases will be included, representing three different provinces. For each case, data will be collected from documents and interviews. Specifically, interviews will be carried out with (1) research stakeholders, and (2) regulatory stakeholders (10 individuals/group*,2 groups/province * 3 provinces =$ 60). During within-case analysis, interview data for each stakeholder group will be analyzed separately using constant comparative analysis. Document analysis will occur iteratively, and will inform interview guide adaptation, and supplement interview data. Cross-case analysis will involve systematic comparison of findings across cases.
DiscussionThis study represents the first in-depth examination of access to administrative health data in Canada. The main outcome will be an overarching mid-range theory explaining inter-provincial variations in access to administrative health data in Canada. This theory will be strengthened by the inclusion of the perspectives of both researchers and those involved in the regulation of data access. The findings from this study may be used to improve equitable and timely access to administrative health data across provinces, and may be transferable to other jurisdictions where barriers to access to administrative health data have been reported.

Context. Public engagement efforts in health policy have posed many value-laden questions, yet those that appreciate the complexity and diversity of the concept of health equity are rare. We introduce the Fairness Dialogues, a new method for deliberating health equity among the general public. We provide its theoretical underpinning and present its empirical illustration and qualitative assessment. Methods. Primarily informed by the scholarship of deliberation, we designed the Fairness Dialogues, featured by reason-giving and inclusive group deliberation using a hypothetical scenario (the town of Troutville) that presents carefully designed, simple, open-ended cases focusing on a chosen equity and fairness issue. To assess whether the Fairness Dialogues encourages reflective views, we conducted a qualitative investigation by focusing on fairness and unfairness of inequalities in life expectancy. Findings. Our results revealed the complex intuitions that people have and their curiosity, patience, and willingness to scrutinize them in-depth through a small group dialogue. Intuitions shared by our study participants are similar to those presented in the scholarly philosophical literature. Conclusions. The Fairness Dialogues is a promising method to incorporate the public's views into policy-making involving value judgment and to develop the capacity of the public to discuss value-laden questions in a reflective and inclusive manner. ; Contexte. Les efforts d'engagement du public en politique de santé ont posé de nombreuses questions chargées de valeur, mais celles qui tiennent compte de la complexité et de la diversité du concept d'équité en matière de santé sont rares. Nous présentons les Fairness Dialogues, une nouvelle méthode pour débattre de l'équité en matière de santé auprès du grand public. Nous en fournissons les fondements théoriques et en présentons l'illustration empirique et l'évaluation qualitative. Méthodes. Principalement inspirés par l'érudition de la délibération, nous avons conçu les Fairness Dialogues, caractérisés par une délibération de groupe objective et inclusive utilisant un scénario hypothétique (la ville de Troutville) qui présente des cas soigneusement conçus, simples, ouverts et axés sur une question d'équité et de justice. Pour évaluer si les Fairness Dialogues encouragent la réflexion, nous avons mené une enquête qualitative en nous concentrant sur l'équité et l'iniquité des inégalités en matière d'espérance de vie. Résultats. Nos résultats ont révélé les intuitions complexes des gens et leur curiosité, leur patience et leur volonté de les examiner en profondeur dans le cadre d'un dialogue en petit groupe. Les intuitions partagées par les participants à notre étude sont similaires à celles présentées dans la littérature philosophique académique. Conclusions. Les Fairness Dialogues sont une méthode prometteuse pour intégrer les points de vue du public dans l'élaboration de politiques impliquant un jugement de valeur et pour développer la capacité du public à discuter de questions chargées de valeurs de manière réfléchie et inclusive.

Context. Public engagement efforts in health policy have posed many value-laden questions, yet those that appreciate the complexity and diversity of the concept of health equity are rare. We introduce the Fairness Dialogues, a new method for deliberating health equity among the general public. We provide its theoretical underpinning and present its empirical illustration and qualitative assessment. Methods. Primarily informed by the scholarship of deliberation, we designed the Fairness Dialogues, featured by reason-giving and inclusive group deliberation using a hypothetical scenario (the town of Troutville) that presents carefully designed, simple, open-ended cases focusing on a chosen equity and fairness issue. To assess whether the Fairness Dialogues encourages reflective views, we conducted a qualitative investigation by focusing on fairness and unfairness of inequalities in life expectancy. Findings. Our results revealed the complex intuitions that people have and their curiosity, patience, and willingness to scrutinize them in-depth through a small group dialogue. Intuitions shared by our study participants are similar to those presented in the scholarly philosophical literature. Conclusions. The Fairness Dialogues is a promising method to incorporate the public's views into policy-making involving value judgment and to develop the capacity of the public to discuss value-laden questions in a reflective and inclusive manner. ; Contexte. Les efforts d'engagement du public en politique de santé ont posé de nombreuses questions chargées de valeur, mais celles qui tiennent compte de la complexité et de la diversité du concept d'équité en matière de santé sont rares. Nous présentons les Fairness Dialogues, une nouvelle méthode pour débattre de l'équité en matière de santé auprès du grand public. Nous en fournissons les fondements théoriques et en présentons l'illustration empirique et l'évaluation qualitative. Méthodes. Principalement inspirés par l'érudition de la délibération, nous avons conçu les Fairness ...

Abstract Background While efforts to improve cancer outcomes have typically focused on improving quality of care, recently, a growing emphasis has been placed on timely access to quality cancer care. This retrospective cohort study examines, at a population level, the relationship between quality and timeliness of colorectal cancer (CRC) care in a single Canadian province (Nova Scotia). Through the provincial cancer registry, we identified all residents diagnosed with invasive CRC between 2001 and 2005 that underwent a non-emergent resection. Using anonymized administrative databases that are individually linked at the patient level, we obtained clinicodemographic, diagnostic, and treatment event data. Selected charts were reviewed to ensure completeness of chemotherapy data. Performance on six quality indicators and the percentage of patients achieving wait-time benchmarks for diagnosis, surgery, and adjuvant therapy were calculated. The relationship between quality indicators and wait-time benchmarks was examined using logistic regression. Results Where an association was identified, patients who received 'higher quality care' had longer wait times. Individuals who received a complete preoperative colonoscopy were less likely to meet benchmarks for time from presentation to diagnosis and from diagnosis to surgery. Those who received an appropriate radiation oncology consultation were less likely to meet benchmarks for time from diagnosis to surgery and from surgery to adjuvant therapy. Conclusions As governments and other organizations move forward with strategies to reduce wait times, they must also focus on how to define and monitor quality care, and consider the relationship between these two dimensions of health care. Similarly, when developing quality improvement initiatives, the impact on resource utilization and potential to create longer waits for care must be considered.

IntroductionBreast cancer screening is intended to identify cancer in early stages when prognosis is better and treatments less invasive.
Objectives and ApproachWe describe Canadian inter- and intra-provincial variation in the percentage of screen-detected cases and identify factors related to having a screen-detected versus a non-screen detected breast cancer.
Breast cancers diagnosed from 2004/7 to 2010/11/12 in 5 Canadian provinces were included. Standard provincial datasets were created using screening program and claims data. A common algorithm (Alberta, Ontario) or variable from the screening dataset (British Columbia, Manitoba, Nova Scotia) was used to identify the mode of diagnosis (screening versus not). Relationship between screen-detected cancer and several demographic, clinical and healthcare utilization factors were explored.
ResultsThe percentage of screen-detected breast cancers varied from 25 to 40 percent across provinces; it ranged 43 to 51 percent for those aged 50-69. Within provinces, the percentage of screen-detected cancers varied across regional health authorities by a low of 1\% to a high of 33\%. Urban residence was positively associated with screen-detection in some provinces and negatively in others. Women in the lowest neighborhood income quintile had the smallest proportion of screen-detected cancers; the absolute difference from those in the highest quintiles ranged from 3.3-11.5\% across provinces. High continuity of care with a usual primary care provider was positively associated with having a screen-detected cancer compared to those with no usual care provider.
Conclusion/ImplicationsThe proportion of screen-detected breast cancers varied significantly across and within provinces suggesting geographic variability in access to screening services. Variation across provinces in terms of factors associated with screen-detected breast cancer also likely reflect access issues. The positive association of high continuity of care with screen-detection in all provinces suggests that regular care with a primary care physician is an important factor in improving screening rates and detection.

BACKGROUND: Guidelines based on patient preferences differ from those developed solely by clinicians and may promote patient adherence to guideline recommendations. There is scant evidence on how to develop patient-informed guidelines. This study aimed to describe how guideline developers identify, incorporate and report patient preferences. METHODS: We employed a descriptive cross-sectional survey design. Eligible organizations were non-profit agencies who developed at least one guideline in the past five years and had considered patient preferences in guideline development. We identified developers through the Guidelines International Network and publicly-available guideline repositories, administered the survey online, and used summary statistics to report results. RESULTS: The response rate was 18.3% (52/284). Respondents included professional societies, and government, academic, charitable and healthcare delivery organizations from 18 countries with at least 1 to ≥6 years of experience generating patient-informed guidelines. Organizations most frequently identified preferences through patient panelists (86.5%) and published research (84.6%). Most organizations (48, 92.3%) used multiple approaches to identify preferences (median 3, range 1 to 5). Most often, organizations used preferences to generate recommendations (82.7%) or establish guideline questions (73.1%). Few organizations explicitly reported preferences; instead, they implicitly embedded preferences in guideline recommendations (82.7%), questions (73.1%), or point-of-care communication tools (61.5%). Most developers had little capacity to generate patient-informed guidelines. Few offered training to patients (30.8%), or had dedicated funding (28.9%), managers (9.6%) or staff (9.6%). Respondents identified numerous barriers to identifying preferences. They also identified processes, resources and clinician- and patient-strategies that can facilitate the development of patient-informed guidelines. In contrast to identifying preferences, developers ...

IntroductionBreast cancer survivors are at risk for late and ongoing problems including cancer recurrence and late effects of treatment. Vulnerable groups may not enjoy equitable access to quality follow-up care. This study examines utilization of guideline-based follow-up care among vulnerable subpopulations in four Canadian provinces.
Objectives and ApproachFor vulnerable groups of breast cancer survivors diagnosed from 2007-2010 in British Columbia (BC), 2007-2011 in Manitoba (MB), 2007-2010 in Ontario (ON), and 2007-2012 in Nova Scotia (NS), alive at 30 months post-diagnosis and followed for five years from diagnosis, we undertook a retrospective population-based cohort study linking cancer registries, clinical and health administrative databases. We calculated adherence to recommended follow-up care for surveillance of recurrent and new cancer, late effects, and general preventive care, and examined variation among provinces. Vulnerable groups were defined as those diagnosed at older ages, with lower income status, and/or who resided in rural area.
ResultsSurvivor numbers were 23,700 (ON), 9493 (BC), 2688 (MB), and 2735 (NS). In Year 2, between 9.3% (BC) and 28.1% (ON) of survivors diagnosed aged 74+ years received annual breast cancer-related PCP or oncologist follow-up visits, a lower proportion than their younger-diagnosed counterparts; rates of surveillance breast imaging (between 34.2% (BC) and 68.6% (ON) in Year 2) were also lower than those diagnosed at younger ages. Those with incomes in the lowest 40\% did not have different rates of primary care physician and oncologist visits compared to the top 60%, nor did their utilization of surveillance imaging or imaging for metastatic disease differ. Guideline-adherent surveillance breast imaging was conducted on a higher proportion of urban than rural patients in all provinces.
Conclusion/ImplicationsWhile area-level incomes do not appear to appreciably affect follow-up care, older age and rural residence resulted in differential access to care. These results suggest that there are gaps in provision of follow-up care that potentially can be addressed through system and practice-level change.

OBJECTIVE: The aim of this study was to identify knowledge translation (KT) strategies aimed at improving sexual, reproductive, maternal, newborn, child and adolescent health (SRMNCAH) and well-being. DESIGN: Rapid scoping review. SEARCH STRATEGY: A comprehensive and peer-reviewed search strategy was developed and applied to four electronic databases: MEDLINE ALL, Embase, CINAHL and Web of Science. Additional searches of grey literature were conducted to identify KT strategies aimed at supporting SRMNCAH. KT strategies and policies published in English from January 2000 to May 2020 onwards were eligible for inclusion. RESULTS: Only 4% of included 90 studies were conducted in low-income countries with the majority (52%) conducted in high-income countries. Studies primarily focused on maternal newborn or child health and well-being. Education (81%), including staff workshops and education modules, was the most commonly identified intervention component from the KT interventions. Low-income and middle-income countries were more likely to include civil society organisations, government and policymakers as stakeholders compared with high-income countries. Reported barriers to KT strategies included limited resources and time constraints, while enablers included stakeholder involvement throughout the KT process. CONCLUSION: We identified a number of gaps among KT strategies for SRMNCAH policy and action, including limited focus on adolescent, sexual and reproductive health and rights and SRMNCAH financing strategies. There is a need to support stakeholder engagement in KT interventions across the continuum of SRMNCAH services. Researchers and policymakers should consider enhancing efforts to work with multisectoral stakeholders to implement future KT strategies and policies to address SRMNCAH priorities. REGISTRATION: The rapid scoping review protocol was registered on Open Science Framework on 16 June 2020 (https://osf.io/xpf2k).

ObjectivesWe will enrich the cancer research ecosystem in Canada through linking cancer registry and administrative health data to the Canadian Partnership for Tomorrow's Health (CanPath) cohort and biobank. CanPath is Canada's largest population health study, including 1% of the Canadian population, which seeks to investigate cancer development.
ApproachWe are achieving record-level linkage of the CanPath harmonized dataset to provincial cancer registry data, and hospitalization and ambulatory care data from the Canadian Institutes of Health Information (CIHI). The CanPATH harmonized dataset includes comprehensive genetics, environment, lifestyle, and behaviour data. Our linkage activities will result in interprovincial data sharing, with centrally-held linked data, a first in Canadian history. We will demonstrate the CanPath-cancer registry-CIHI linkage potential by investigating the impact of the COVID-19 pandemic on healthcare utilization and outcomes among those with cancer.
ResultsThe linkage is ongoing and anticipated to be completed by September 2022. Linked data will be made available through the CanPath Data Safe Haven, a cloud-based solution that meets the legal requirements of the data sharing agreements and provincial privacy policies, and is accessible to researchers through secure access. The CanPath Data Safe Haven will be a federated data platform for Canadian researchers to access, analyze, and contribute research in a collaborative environment. By linking these datasets, this project will: address concerns related to accessibility of cancer data in Canada; bring more value to existing data; support an enhanced understanding of the impacts of cancer on marginalized populations; and create a more integrated approach to cancer data access and management.
ConclusionCanPath will be the first program in Canadian history to combine the wealth of cohort resources with cancer registry and administrative health data in a central location at a national scale. We will provide a single point of access for researchers to conduct novel investigations into cancer development and outcomes.

ABSTRACT
ObjectiveCanIMPACT is a multi-province Canadian research team funded to understand the interplay between primary and oncology breast cancer care. A first step was to describe current practice and inter/intra-provincial care variation across the care continuum using provincial administrative health data. Here we describe the inter-provincial process and analysis plans.
ApproachOur multi-disciplinary team includes five Canadian provinces: British Columbia, Alberta, Manitoba, Ontario and Nova Scotia. Cohorts consist of all breast cancers diagnosed from 2007 to at least 2011 in each of the five provinces. Common databases include cancer registries, census area-level income and rurality, outpatient physician claims, ambulatory care and inpatient hospitalizations. Other databases with laboratory, pharmacy, emergency services, and immigration data were available in some provinces. Common data elements across provincial datasets were identified, and a standardized methodology was developed.
ResultsCommon data processing and analysis plans were finalized over 24 months; provinces refined details as per local context while maximizing methodological comparability. Basic descriptive analyses plus 18 phase-specific and 3 longitudinal analyses have been planned. Six plans for the diagnostic phase focus on identifying modifiable disparities in access and outcomes; 8 plans for the treatment phase focus on variation in chemotherapy treatment patterns, quality/safety, and utilization of primary care services; 4 plans for the survivorship phase focus on adherence to guidelines for follow-up breast cancer care, other chronic diseases and preventive care; 3 longitudinal analyses assess factors related to changes in utilization of chronic disease services over the cancer care continuum.
ConclusionsWe have shown it is feasible to develop and standardize data processing and analyses across multiple provinces to address important cancer care questions across the continuum. This work will inform comparisons and improvements in Canadian cancer care. This effort has also helped increase research capacity in health services research.

BACKGROUND. This is the first time deemed consent, where the entire population of a jurisdiction is considered to have consented for donation unless they have registered otherwise, will be implemented in North America. While relatively common in other regions of the world—notably Western Europe—it is uncertain how this practice will influence deceased donation practices and attitudes in Canada. METHODS. We describe a Health Canada funded program of research that will evaluate the implementation process and full impact of the deceased organ donation legislation and the health system transformation in Nova Scotia that includes opt-out consent. RESULTS. There is a need to evaluate the impact of these changes to inform not only Nova Scotia and Atlantic Canada, but also other provincial, national, and international stakeholders. CONCLUSIONS. We establish a rigorous academic framework that we will use to evaluate this significant health system transformation.