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The Canadian Screening for Colorectal Cancer Research Network (CanSCCRN) recently set out to develop a national CRC screening research agenda and identify priority research areas. The specific objectives were to (1) identify evidence gaps relevant to CRC screening and the barriers and facilitators to evidence generation and uptake by CRC screening programs, (2) establish high-priority collaborative research ideas to inform best CRC screening practices, and (3) identify one to two research topics for grant development and submission within 12 to 18 months. Three focus groups were conducted with network members and relevant parties (n = 15) to identify evidence gaps, barriers, and facilitators to evidence generation and uptake. Three workshops were subsequently held to discuss focus group findings and develop an action plan for research. An electronic survey was used to prioritize the evidence gaps to be addressed. Overall, five categories of barriers and six categories of facilitators to evidence uptake and generation were identified, as well as 23 evidence gaps to be addressed. Screening participation, post-polypectomy surveillance, and screening age range were identified as research priority research areas. Adequate resourcing and infrastructure, as well as partnerships with knowledge end users, are integral to addressing these research areas and advancing CRC screening programs in Canada and beyond.

Abstract Background Public health nutrition recommendations and clinical dietary interventions emphasize eating healthy food at home, implicitly requiring household foodwork. Household foodwork is defined as the physical and mental tasks a household does for eating meals and snacks. Because no tools exist to measure it, how much time people spend doing household foodwork and the foodwork barriers they experience remain unknown. The objective of the present research was to develop the first stand-alone household foodwork assessment tool. Methods Through informal interviews with partners with lived experience, clinicians, and researchers, a literature review, a stakeholder meeting of advisors, and a two-round electronic Delphi process including face/content validation by expert panelists (n = 21), we developed the 10-question household foodwork interactional assessment questionnaire (FIA-Q10). An optional accompanying module was developed to collect self-identified demographic data to provide context for understanding how social-structural positionality factors may interact to influence foodwork. Results The FIA-Q10 assesses the domains of household composition, frequency of eating at home, special diets within a household, foodwork stress intensity, foodwork barriers, desired supports related to foodwork, and time use for foodwork. The FIA-Q10 measures time use for four subdomains of foodwork among individuals and their households: (1) planning, (2) getting, (3) preparing/cooking, and (4) cleaning up food. In the second Delphi round, the FIA-Q10 scored 95% for language appropriateness, 67% for visual appropriateness, 95% for relevance, 95% for representativeness, and 95% for distribution. Suggested improvements were implemented. All Delphi panelists (100%) reported they would consider using the FIA-Q10. Conclusions The FIA-Q10’s development is the first step towards a standardized assessment of foodwork, enabling examination of challenges in foodwork that may impact nutrition and nutrition equity. Future research will focus on FIA-Q10 validation in multiple populations.

Little is known about the impacts of fatigue after cancer treatment, including whether cancer-related fatigue impacts people’s use of healthcare. This study sought to examine how cancer-related fatigue impacts healthcare use after completing cancer treatment. A population-based survey was administered in Nova Scotia, Canada, to examine survivors’ experiences and needs after completing cancer treatment. Respondents included survivors of breast, melanoma, colorectal, prostate, hematologic, and young adult cancers who were 1–3 years post-treatment. Survey responses were linked to cancer registry, physicians’ claims, hospitalization, and ambulatory care data. Data were analyzed descriptively and using regression models. The final study cohort included 823 respondents. Younger respondents reported higher levels of cancer-related fatigue compared to older respondents. More females than males reported cancer-related fatigue. Upon adjusted analyses, those with cancer-related fatigue had lower odds of being discharged to primary care for their cancer-related follow-up (odds ratio = 0.71, p = 0.029). Moreover, those with cancer-related fatigue had 19% higher primary care use (incidence rate ratio = 1.19, p < 0.0001) and 37% higher oncology use (incidence rate ratio = 1.37, p < 0.016) during the follow-up period compared to those without cancer-related fatigue. Providers (oncology and primary care) may require additional support to identify clinically relevant fatigue and refer patients to appropriate resources and services.

Background: Diabetes is the leading cause of kidney disease and contributes to 38% of kidney failure requiring dialysis. A gap in detection and management of type 2 diabetes (T2D) in chronic kidney disease (CKD) exists in primary care. Community pharmacists are positioned to support those not able to access kidney care through traditional pathways. Algorithms were developed and validated to assist community pharmacists in identifying individuals with T2D in CKD and prescribing kidney-protective medications. Objective: The objective was to develop and validate pharmacist algorithms to confirm T2D and CKD and to prescribe guideline-directed therapies for individuals with an estimated glomerular filtration rate (eGFR) of 30 to 60 mL/min/1.73 m² in community pharmacy primary care clinics in Nova Scotia. Design: Lynn’s method was utilized for algorithm development and content validation. Interview data were analyzed using qualitative descriptive analysis. Setting: Pharmacists working in primary care clinic settings completed content and face algorithm validation, and virtual interviews were conducted following each round of validation. Patients: The algorithms aim to support individuals with T2D and CKD in primary care by optimizing the resources and capacity of community pharmacists while ensuring safety and quality of care through a team-based approach. Patient partners were not part of algorithm development and validation. Measurements: Content validity was computed using an item-level content validity index (I-CVI) and scale-level content validity index (S-CVI/Ave) per round. To measure face validity, percentages of those that “agreed” or “strongly agreed” to five statements were calculated. Methods: Evidence- and expert-informed algorithms were developed and revised using Lynn’s 3-step method (domain identification, item generation per domain, and instrument formation). Best evidence was collated with literature searches, and experts in nephrology, endocrinology, family medicine, nursing, and pharmacy revised the algorithms until there was consensus agreement on 4 final algorithms (detection of T2D and CKD, initiation/titration of angiotensin-converting enzyme inhibitors or angiotensin receptor blockers, and initiation/management of sodium-glucose cotransporter-2 inhibitors and finerenone). Six community pharmacists per round for 3 rounds were needed to validate the algorithms. A 2-part questionnaire was utilized where pharmacists rated content and face validity using Likert scales. I-CVI and S-CVI/Ave per round and across 3 rounds were determined. Percentages were calculated for the rating level of agreement to 5 statements. Interviews were conducted and analyzed. Revisions were made to the algorithms between rounds. Results: Eighteen community pharmacists (6 per round) participated with a mean ± standard deviation of 18 ±11 years of experience. The I-CVI of each item of the algorithms per round ranged from 0.83 to 1, which met the content validity threshold of 0.83 ( P < .05) for at least 6 participants. The overall S-CVI/Ave across 3 rounds was 0.97. The overall percentage of participants across 3 rounds who agreed or strongly agreed to 5 face validity statements ranged from 83% to 100%, which was above the prespecified threshold for face validity consensus. Limitations: The algorithms are intended for individuals with an eGFR of 30 to 60 mL/min/1.73m². While guideline medications are indicated below this threshold, this cut point was selected as these individuals should typically be referred to a nephrologist. There is a potential for delays in initiation of kidney-protective medications below this threshold while waiting to be seen by nephrology. Conclusions: This is the first study to develop and validate algorithms for a new model of care that utilizes community pharmacists to identify and manage T2D and CKD in primary care. The algorithms achieved high content and face validity. Future implementation and evaluation will determine the effectiveness and safety of the algorithms. Trial Registration: Not registered.

Cardiac rehabilitation is associated with lower mortality and improved psychosocial outcomes. However, disparities exist in referral and access to cardiac rehabilitation for Nova Scotian women, a situation exacerbated by the COVID-19 pandemic. Women@Heart (W@H) is a 4-month community-based peer support program developed and validated by the University of Ottawa Heart Institute, for women living with heart disease. The program aims to empower women with coping strategies, provide a supportive learning environment, and establish volunteer advocacy groups. The primary objective of this study is to evaluate the implementation feasibility of the W@H program for women living in Nova Scotia. The primary outcome is the implementation feasibility of W@H in Nova Scotia, measured through participant attendance and program completion rates. Peer leaders will record participant attendance. The psychosocial impact of W@H will be assessed using psychometric tools that measure the following: social support, adaptive coping, stress, symptoms of anxiety and depression, and health-related and disease-specific quality of life. Data will be collected using a pre- and post-program questionnaire administered to participants. The pilot program is expected to commence in the first quarter of 2024. One peer leader with lived experience of heart disease, who has previously completed the W@H program as a participant, has been trained. Participants have been identified through healthcare provider referral, self-referral, brochures, and peer-networking. Each cohort will consist of 5-10 participants. The W@H pilot project will assess the implementation feasibility and the impact of community-based peer support on the well-being of Nova Scotian women living with heart disease. Résumé: La réadaptation cardiaque est associée à une mortalité plus faible et à des bienfaits psychosociaux. Cependant, il existe des disparités en ce qui a trait à l'orientation et à l'accès à la réadaptation cardiaque pour les femmes de la Nouvelle-Écosse, une situation exacerbée par la pandémie de COVID-19. Femmes@Cœur est un programme de soutien collectif par les pairs, créé et validé par l’Institut de cardiologie de l’Université d’Ottawa, à l’intention des femmes atteintes d'une maladies du cœur. Le programme vise à autonomiser les femmes en leur proposant des stratégies d’adaptation, à leur fournir un environnement propice à l’apprentissage et à former des groupes de bénévoles pour la défense de leurs intérêts. La présente étude a pour principal objectif d’évaluer la faisabilité de la mise en œuvre du programme Femmes@Cœur pour les femmes de la Nouvelle-Écosse. Le critère d’évaluation principal de l’étude est la faisabilité de la mise en œuvre du programme Femmes@Cœur en Nouvelle-Écosse, déterminée par la mesure des taux de participation et d’achèvement du programme. Des responsables parmi les pairs consigneront la présence des participantes. Les répercussions psychosociales du programme Femmes@Cœur seront évaluées à l’aide d’outils psychométriques mesurant une gamme de paramètres : soutien social, stratégies d’adaptation, niveau de stress, symptômes d’anxiété et de dépression, et qualité de vie liée à la santé et à la maladie en question. Les données seront recueillies au moyen de questionnaires administrés aux participantes avant et après le programme, et le projet pilote devrait être lancé le premier trimestre de 2024. Une responsable parmi les pairs, elle-même atteinte d’une maladie du cœur et ayant déjà pris part au programme Femmes@Cœur en tant que participante, a été formée à cet effet. Les participantes ont été trouvées de diverses façons : orientation par un professionnel de la santé, inscription spontanée, brochures et réseautage entre pairs. Chaque cohorte sera par ailleurs composée de 5 à 10 participantes. Enfin, le projet pilote Femmes@Cœur évaluera la faisabilité de la mise en œuvre et les répercussions du soutien collectif entre pairs sur le bien-être des femmes de la Nouvelle-Écosse atteintes de maladies cardiaques.

Abstract Background As the Canadian population ages and the prevalence of chronic illnesses increases, delivering high-quality care to individuals with advanced life limiting illnesses becomes more challenging. Community-based navigation programs are a promising approach to address these challenges, but little is known about how these programs are successfully implemented to meet the needs of this population. This study sought to identify the key determinants that contribute to the successful implementation of these programs within Canada. Methods A qualitative study was undertaken to understand the implementation of eleven innovative, community-based navigation programs that aim to address the needs of individuals with life-limiting illnesses as they approach the end of life. The Consolidated Framework for Implementation Research (CFIR) guided the study design. Key informants (n = 23) within these programs took part in semi-structured interviews where they were asked to discuss how these programs are implemented. Data were analyzed using techniques employed in qualitative description. Results We identified key determinants of successful implementation within each CFIR domain. In the outer setting domain, participants emphasized the importance of filling gaps in care to meet client needs, developing strong relationships with clients and community-based organizations, and navigating relationships with healthcare providers. At the inner setting level, leadership support, staff compatibility, and available resources were identified as important factors. In terms of intervention characteristics, the ability to adapt was cited as a facilitator, whereas costs were identified as a barrier. For the characteristics of individuals, participants described the importance of having staff whose values align with the program, and who have the experience and skills necessary to work with complex clients. Finally, having strong champions and evaluation processes were highlighted as important process-oriented determinants of successful implementation. Conclusion This study provides valuable insights into the determinants of successful implementation of community-based navigation programs in Canada. Understanding these determinants can guide the future development and integration of navigation programs to successfully meet the needs of those with life-limiting illnesses.

Abstract Background We sought to identify innovative navigation programs across Canadian jurisdictions that target their services to individuals affected by life-limiting illness and their families, and articulate the principal components of these programs that enable them to address the needs of their clients who are living in the community. Methods This realist evaluation used a two-phased approach. First, we conducted a horizon scan of innovative community-based navigation programs across Canadian jurisdictions to identify innovative community-based navigation programs that aim to address the needs of community-dwelling individuals affected by life-limiting illness. Second, we conducted semi-structured interviews with key informants from each of the selected programs. Informants included individuals responsible for managing and delivering the program and decision-makers with responsibility and/or oversight of the program. Analyses proceeded in an iterative manner, consistent with realist evaluation methods. This included iteratively developing and refining Context-Mechanism-Outcome (CMO) configurations, and developing the final program theory. Results Twenty-seven navigation programs were identified from the horizon scan. Using specific eligibility criteria, 11 programs were selected for subsequent interviews and in-depth examination. Twenty-three participants were interviewed from these programs, which operated in five Canadian provinces. The programs represented a mixture of community (non-profit or volunteer), research-initiated, and health system programs. The final program theory was articulated as: navigation programs can improve client outcomes if they have supported and empowered staff who have the time and flexibility to personalize care to the needs of their clients. Conclusions The findings highlight key principles (contexts and mechanisms) that enable navigation programs to develop client relationships, personalize care to client needs, and improve client outcomes. These principles include staff (or volunteer) knowledge and experience to coordinate health and social services, having a point of contact after hours, and providing staff (and volunteers) time and flexibility to develop relationships and respond to individualized client needs. These findings may be used by healthcare organizations – outside of navigation programs – to work towards more person-centred care.

Prostate cancer is a common and life-altering condition among Canadian men, yet little is known about how follow-up care is provided to those who have completed treatment. Despite improving survival rates, survivors experience ongoing needs and are often not provided with support to manage them. This study sought to investigate the post-treatment experiences and needs of prostate cancer survivors and to determine if and how these needs are being met. Using a qualitative description design, prostate cancer survivors who had completed treatment took part in semi-structured interviews. The interviews were recorded and analyzed thematically. The participants experienced varying levels of satisfaction with their follow-up care. While primary care providers played significant roles, continuity of care and specialist involvement varied. Most participants felt unprepared to manage the long-term effects of their cancer due to a lack of information and resources from their healthcare providers. Instead, participants turned to their peers for support. Ongoing physical and psychosocial needs went unmet and had significant impacts on their daily lives. Participants felt that support for these issues should be automatically integrated into their follow-up care. In summary, this study revealed the importance of integrated, patient-centered follow-up care for prostate cancer in Atlantic Canada.

After treatment, cancer survivors require ongoing, comprehensive care to improve quality of life, reduce disability, limit complications, and restore function. In Canada and internationally, follow-up care continues to be delivered most often by oncologists in institution-based settings. There is extensive evidence to demonstrate that this model of care does not work well for many survivors or our cancer systems. Randomized controlled trials have clearly demonstrated that alternate approaches to follow-up care are equivalent to oncologist-led follow-up in terms of patient outcomes, such as recurrence, survival, and quality of life in a number of common cancers. In this paper, we discuss the state of follow-up care for survivors of prevalent cancers and the need for more personalized models of follow-up. Indeed, there is no one-size-fits-all solution to post-treatment follow-up care, and more personalized approaches to follow-up that are based on individual risks and needs after cancer treatment are warranted. Canada lags behind when it comes to personalizing follow-up care for cancer survivors. There are many reasons for this, including difficulty in determining who is best served by different follow-up pathways, a paucity of evidence-informed self-management education and supports for most survivors, poorly developed IT solutions and systems, and uneven coordination of care. Using implementation science theories, approaches, and methods may help in addressing these challenges and delineating what might work best in particular settings and circumstances.

Background: This study aimed to understand Canadian cancer survivors’ experiences during the return-to-work (RTW) process. Methods: A prospective qualitative longitudinal design was employed using the principles of phenomenological inquiry. Cancer survivors took part in three in-depth interviews: at the end of treatment, and 3 and 9 months after the first interview. Transcripts were analyzed using constant comparative analysis, guided by the Cancer and Work model. Results: A total of 38 in-depth interviews were conducted with 13 participants. The resultant themes were: (1) supports received or desired to enable RTW; (2) others’ limited understanding of the long-term impacts of a cancer diagnosis and its treatment; (3) worries and self-doubts about returning to work; and (4) changing perspectives on life and work after cancer. Conclusions: Cancer patients returning to work after treatment often experience challenges throughout the process, including varying levels of support from others and a range of ongoing effects and motivation to RTW. There is a clear gap in terms of the professional supports available to these individuals. Future research should focus on investigating how to improve both quality and accessibility of supports in a way that is personalized to the individual.

Canadian provinces routinely collect patient-level data for administrative purposes. These real-world data (RWD) can be used to generate real-world evidence (RWE) to inform clinical care and healthcare policy. The CanREValue Collaboration is developing a framework for the use of RWE in cancer drug funding decisions. A Data Working Group (WG) was established to identify data assets across Canada for generating RWE of oncology drugs. The mapping exercise was conducted using an iterative scan with informant surveys and teleconference. Data experts from ten provinces convened for a total of three teleconferences and two in-person meetings from March 2018 to September 2019. Following each meeting, surveys were developed and shared with the data experts which focused on identifying databases and data elements, as well as a feasibility assessment of conducting RWE studies using existing data elements and resources. Survey responses were compiled into an interim data report, which was used for public stakeholder consultation. The feedback from the public consultation was used to update the interim data report. We found that databases required to conduct real-world studies are often held by multiple different data custodians. Ninety-seven databases were identified across Canada. Provinces held on average 9 distinct databases (range: 8–11). An Essential RWD Table was compiled that contains data elements that are necessary, at a minimal, to conduct an RWE study. An Expanded RWD Table that contains a more comprehensive list of potentially relevant data elements was also compiled and the availabilities of these data elements were mapped. While most provinces have data on patient demographics (e.g., age, sex) and cancer-related variables (e.g., morphology, topography), the availability and linkability of data on cancer treatment, clinical characteristics (e.g., morphology and topography), and drug costs vary among provinces. Based on current resources, data availability, and access processes, data experts in most provinces noted that more than 12 months would be required to complete an RWE study. The CanREValue Collaboration’s Data WG identified key data holdings, access considerations, as well as gaps in oncology treatment-specific data. This data catalogue can be used to facilitate future oncology-specific RWE analyses across Canada.

Objective To explore the views of underserved and equity-denied communities in Nova Scotia, Canada, regarding organ and tissue donation and deemed consent legislation.Design A qualitative descriptive study was undertaken, employing both interviews and focus groups.Setting The province of Nova Scotia, Canada—the first jurisdiction in North America to implement deemed consent legislation for organ and tissue donation.Participants Leaders of African Nova Scotian, Lesbian, Gay, Bisexual, Trans, Queer, Two Spirit (LGBTQ2S+) and Faith-based communities (Islam and Judaism) were invited to participate (n=11). Leaders were defined as persons responsible for community organisations or in other leadership roles, and were purposively recruited by the research team.Results Through thematic analysis, four main themes were identified: (1) alignment with personal values as well as religious beliefs and perspectives; (2) trust and relationships, which need to be acknowledged and addressed in the context of deemed consent legislation; (3) cultural competence, which is essential to the roll-out of the new legislation and (4) communication and information to combat misconceptions and misinformation, facilitate informed decision-making, and mitigate conflict within families.Conclusions Leaders of African Nova Scotian, LGBTQ2S+ and Faith-based communities in Nova Scotia are highly supportive of deemed consent legislation. Despite this, many issues exemplify the need for cultural competence at all levels. These findings should inform ongoing implementation of the legislation and other jurisdictions considering a deemed consent approach to organ and tissue donation.

The interventions used in cancer-survivorship care do not always address outcomes important to survivors. This study sought to understand stakeholders’ views on the key concerns of cancer survivors after treatment and the interventions needed to meet survivors’ and families’ psychosocial needs after completing cancer treatment. We conducted a descriptive qualitative study using semi-structured interviews with stakeholders (survivors, family/friend caregivers, oncology providers, primary care providers, and cancer system decision-/policy-makers) from across Canada. For the data analysis, we used techniques commonly employed in descriptive qualitative research, such as coding, grouping, detailing, and comparing the data. There were 44 study participants: 11 survivors, seven family/friend caregivers, 18 health care providers, and eight decision-/policy-makers. Stakeholder-relevant interventions to address survivors’ psychosocial needs were categorized into five groups, as follows: information provision, peer support, navigation, knowledge translation interventions, and caregiver-specific supports. These findings, particularly interventions that deliver timely and relevant information about the post-treatment period and knowledge translation interventions that strive to integrate effective tools and programs into survivorship care, have implications for future research and practice.

The outcomes assessed in cancer survivorship research do not always match the outcomes that survivors and health system stakeholders identify as most important in the post-treatment follow-up period. This study sought to identify stakeholder-relevant outcomes pertinent to post-treatment follow-up care interventions. We conducted a descriptive qualitative study using semi-structured telephone interviews with stakeholders (survivors, family/friend caregivers, oncology providers, primary care providers, and cancer system decision-/policy-makers) across Canada. Data analysis involved coding, grouping, detailing, and comparing the data by using the techniques commonly employed in descriptive qualitative research. Forty-four participants took part in this study: 11 survivors, seven family/friend caregivers, 18 health care providers, and eight decision-makers. Thirteen stakeholder-relevant outcomes were identified across participants and categorized into five outcome domains: psychosocial, physical, economic, informational, and patterns and quality of care. In the psychosocial domain, one’s reintegration after cancer treatment was described by all stakeholder groups as one of the most important challenges faced by survivors and identified as a priority outcome to address in future research. The outcomes identified in this study provide a succinct suite of stakeholder-relevant outcomes, common across cancer types and populations, that should be used in future research on cancer survivorship care.

Cancer causes substantial emotional and psychosocial distress, which may be exacerbated by delays in treatment. The COVID-19 pandemic has resulted in increased wait times for many patients with cancer. In this study, the psychosocial distress associated with waiting for cancer surgery during the pandemic was investigated. This cross-sectional, convergent mixed-methods study included patients with lower priority disease during the first wave of COVID-19 at an academic, tertiary care hospital in eastern Canada. Participants underwent semi-structured interviews and completed two questionnaires: Hospital Anxiety and Depression Scale (HADS) and Perceived Stress Scale (PSS). Qualitative analysis was completed through a thematic analysis approach, with integration achieved through triangulation. Fourteen participants were recruited, with cancer sites including thyroid, kidney, breast, prostate, and a gynecological disorder. Increased anxiety symptoms were found in 36% of patients and depressive symptoms in 14%. Similarly, 64% of patients experienced moderate or high stress. Six key themes were identified, including uncertainty, life changes, coping strategies, communication, experience, and health services. Participants discussed substantial distress associated with lifestyle changes and uncertain treatment timelines. Participants identified quality communication with their healthcare team and individualized coping strategies as being partially protective against such symptoms. Delays in surgery for patients with cancer during the COVID-19 pandemic resulted in extensive psychosocial distress. Patients may be able to mitigate these symptoms partially through various coping mechanisms and improved communication with their healthcare teams.

Objectives We 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. Approach We 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. Results The 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. Conclusion CanPath 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.

Objectives To 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. Approach The "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. Results 1557 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. Conclusion This 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.

Abstract Background As part of a broader study to improve the capacity for advance care planning (ACP) in primary healthcare settings, the research team set out to develop and validate a computerized algorithm to help primary care physicians identify individuals at risk of death, and also carried out focus groups and interviews with relevant stakeholder groups. Interviews with patients and family caregivers were carried out in parallel to algorithm development and validation to examine (1) views on early identification of individuals at risk of deteriorating health or dying; (2) views on the use of a computerized algorithm for early identification; and (3) preferences and challenges for ACP. Methods Fourteen participants were recruited from two Canadian provinces. Participants included individuals aged 65 and older with declining health and self-identified caregivers of individuals aged 65 and older with declining health. Semi-structured interviews were conducted via telephone. A qualitative descriptive analytic approach was employed, which focused on summarizing and describing the informational contents of the data. Results Participants supported the early identification of patients at risk of deteriorating health or dying. Early identification was viewed as conducive to planning not only for death, but for the remainder of life. Participants were also supportive of the use of a computerized algorithm to assist with early identification, although limitations were recognized. While participants felt that having family physicians assume responsibility for early identification and ACP was appropriate, questions arose around feasibility, including whether family physicians have sufficient time for ACP. Preferences related to the content of and approach to ACP discussions were highly individualized. Required supports during ACP include informational and emotional supports. Conclusions This work supports the role of primary care providers in the early identification of individuals at risk of deteriorating health or death and the process of ACP. To improve ACP capacity in primary healthcare settings, compensation systems for primary care providers should be adjusted to ensure appropriate compensation and to accommodate longer ACP appointments. Additional resources and more established links to community organizations and services will also be required to facilitate referrals to relevant community services as part of the ACP process.

Introduction In 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. Methods A 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. Discussion This 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.

Abstract Background One of the key conceptual challenges in advancing our understanding of how to more effectively sustain innovations in health care is the lack of clarity and agreement on what sustainability actually means. Several reviews have helped synthesize and clarify how researchers conceptualize and operationalize sustainability. In this study, we sought to identify how individuals who implement and/or sustain evidence-informed innovations in health care define sustainability. Methods We conducted in-depth, semi-structured interviews with implementation leaders and relevant staff involved in the implementation of evidence-based innovations relevant to cancer survivorship care (n = 27). An inductive approach, using constant comparative analysis, was used for analysis of interview transcripts and field notes. Results Participants described sustainability as an ongoing and dynamic process that incorporates three key concepts and four important conditions. The key concepts were: (1) continued capacity to deliver the innovation, (2) continued delivery of the innovation, and (3) continued receipt of benefits. The key conditions related to (2) and (3), and included: (2a) innovations must continue in the absence of the champion or person/team who introduced it and (3a) adaptation is critical to ensuring relevancy and fit, and thus to delivering the intended benefits. Conclusions Participants provided a nuanced view of sustainability, with both continued delivery and continued benefits only relevant under certain conditions. The findings reveal the interconnected elements of what sustainability means in practice, providing a unique and important perspective to the academic literature.

Abstract Background In order to maximize later health, there are established components and guidelines for quality follow-up care of breast cancer survivors. However, adherence to quality follow-up in Canada may not be optimal, and may vary by province. We determined and compared the proportion of patients in each province who received adherent and non-adherent surveillance for recurrence, new cancers and late effects, recommended preventive care, and recommended physician visits for comorbidities. Methods Cohorts consisted of all adult women diagnosed with incident invasive breast cancer between 2007 and 2010/2012 in four Canadian provinces (British Columbia (BC) N = 9338; Manitoba N = 2688; Ontario N = 23,700; Nova Scotia (NS) N = 2735), identified from provincial cancer registries, alive and cancer-free at 30 months post-diagnosis. Their healthcare utilization was determined from one to 5 years post-treatment, using linked administrative databases. Adherence, underuse, and overuse of recommended services were evaluated yearly and compared using descriptive statistics. Results In all provinces and follow-up years, the majority of survivors had more than the recommended number of visits to either an oncologist or primary care physician (range 53.8% NS Year 3; 85.8% Ontario Year 4). The proportion of patients with the guideline-recommended number of oncologist visits varied by province (range 29.8% BC Year 5; 74.8% Ontario Year 5), and the proportion of patients with less than the recommended number of specified breast cancer-related visits with either an oncologist or primary care physician ranged from 32.6% (Ontario Year 2) to 84.4% (NS Year 3). Underuse of surveillance breast imaging was identified in NS and BC. The proportion of patients receiving imaging for metastatic disease (not recommended in the guidelines) in BC, Manitoba, and Ontario (not reported in NS) ranged from 20.3% (BC Year 5) to 53.3% (Ontario Year 2). Compliance with recommended physician visits for patients with several chronic conditions was high in Ontario and NS. Preventive care was less than optimal in all provinces with available data. Conclusions Quality of breast cancer survivor follow-up care varies among provinces. Results point to exploration of factors affecting differences, province-specific opportunities for care improvement, and the value of administrative datasets for health system assessment.

Objectives Moving innovations into healthcare organisations to increase positive health outcomes remains a significant challenge. Even when knowledge and tools are adopted, they often fail to become integrated into the long-term routines of organisations. The objective of this study was to identify factors and processes influencing the sustainability of innovations in cancer survivorship care.Design Qualitative study using semistructured, in-depth interviews, informed by grounded theory. Data were collected and analysed concurrently using constant comparative analysis.Setting 25 cancer survivorship innovations based in six Canadian provinces.Participants Twenty-seven implementation leaders and relevant staff from across Canada involved in the implementation of innovations in cancer survivorship.Results The findings were categorised according to determinants, processes and implementation outcomes, and whether a factor was necessary to sustainability, or important but not necessary. Seven determinants, six processes and three implementation outcomes were perceived to influence sustainability. The necessary determinants were (1) management support; (2) organisational and system-level priorities; and (3) key people and expertise. Necessary processes were (4) innovation adaptation; (5) stakeholder engagement; and (6) ongoing education and training. The only necessary implementation outcome was (7) widespread staff and organisational buy-in for the innovation.Conclusions Factors influencing the sustainability of cancer survivorship innovations exist across multiple levels of the health system and are often interdependent. Study findings may be used by implementation teams to plan for sustainability from the beginning of innovation adoption initiatives.

Cancer care is complex and exists within the broader healthcare system. The CanIMPACT team sought to enhance primary cancer care capacity and improve integration between primary and cancer specialist care, focusing on breast cancer. In Canada, all medically-necessary healthcare is publicly funded but overseen at the provincial/territorial level. The CanIMPACT Administrative Health Data Group’s (AHDG) role was to describe inter-sectoral care across five Canadian provinces: British Columbia, Alberta, Manitoba, Ontario and Nova Scotia. This paper describes the process used and challenges faced in creating four parallel administrative health datasets. We present the content of those datasets and population characteristics. We provide guidance for future research based on ‘lessons learned’. The AHDG conducted population-based comparisons of care for breast cancer patients diagnosed from 2007-2011. We created parallel provincial datasets using knowledge from data inventories, our previous work, and ongoing bi-weekly conference calls. Common dataset creation plans (DCPs) ensured data comparability and documentation of data differences. In general, the process had to be flexible and iterative as our understanding of the data and needs of the broader team evolved. Inter-sectoral data inconsistencies that we had to address occurred due to differences in: 1) healthcare systems, 2) data sources, 3) data elements and 4) variable definitions. Our parallel provincial datasets describe the breast cancer diagnostic, treatment and survivorship phases and address ten research objectives. Breast cancer patient demographics reflect inter-provincial general population differences. Across provinces, disease characteristics are similar but underlying health status and use of healthcare services differ. Describing healthcare across Canadian jurisdictions assesses whether our provincial healthcare systems are delivering similar high quality, timely, accessible care to all of our citizens. We have provided a description of our experience in trying to achieve this goal and include a list of ‘lessons learned’ and a study process checklist for future use.

Introduction Breast cancer survivors are at risk for late and ongoing problems including cancer recurrence and late effects of treatment. Lack of access to quality follow-up care may affect later mortality, morbidity, and quality of life. This study examines variation in utilization of guideline-based follow-up care separately for four Canadian provinces. Objectives and Approach For our retrospective population-based cohort study of breast cancer survivors diagnosed from 2007 to 2010 in British Columbia (BC), 2007-2011 in Manitoba (MB), 2007-2010 in Ontario (ON), and 2007-2012 in Nova Scotia (NS), we linked provincial cancer registries, clinical and health administrative databases, and followed cases alive at 30 months post-diagnosis to five years from diagnosis. For each province, we calculated percent adherence, overuse, and underuse of recommended follow-up care, including surveillance for recurrent and new cancer, surveillance for late effects, and general preventive care. We also examined variation among provinces and over time. Results Survivor numbers were 23,700 (ON), 9493 (BC), 2688 (MB), and 2735 (NS). Annual oncologist visit guideline compliance varied provincially (e.g. Year 2 ON=32.7%, BC=15.0%). For most provinces and follow-up years, the majority of survivors had fewer oncologist visits than recommended. However, survivors had additional annual breast cancer-related visits to a primary care provider. Surveillance breast imaging guideline compliance was high (e.g. Year 2, ON=81.1%, MB=72.0%, NS=52.8%, BC =49.7%), with rates declining in ON and MB (to approximately 64%), but increasing in NS and BC (to approximately 58%) by Year 5. Overuse of breast imaging was identified in NS (9.1%-20.7% overuse in follow-up years 2-5). As per the guideline, 72.9%-79.7% (Years 2-5) of BC survivors had no imaging for metastastic disease, highest among all provinces. Conclusion/Implications Provincial and temporal variations in guideline adherence were identified. Patterns differed by guideline, and both overuse and underuse were observed. These results point to opportunities to improve survivor care and efficiencies in care delivery. In particular, regular care with a primary care physician has been shown to improve follow-up care.

Introduction Breast 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 Approach For 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. Results Survivor 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/Implications While 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.

Introduction A long breast cancer diagnostic process can affect patient anxiety and survival. Variations in the length of the diagnostic interval for similar patient presentations can indicate health system inequities and/or inefficiencies. Objectives and Approach We describe the breast cancer diagnostic interval across Canada and factors associated with its length. We studied breast cancer patients diagnosed from 2004/7 to 2010/11/12 in the Canadian provinces: British Columbia, Alberta, Manitoba, Ontario, and Nova Scotia. Using administrative data, we created parallel population-based, provincial-level datasets and ran common analyses. The diagnostic interval was defined from the screening mammogram to the diagnosis for screen-led and from the first referral/test ordering date to the diagnosis for diagnostic-led patients. Stratified by these two diagnostic routes, we describe the variation in the interval across provinces and report on the province-specific associations between the diagnostic interval and: patient age, comorbid disease burden, socioeconomic status combined with rural residence, and continuity of primary care while controlling for cancer stage. Results The median diagnostic interval varied by 6 days (29 to 35 days) across provinces. Screen-led patients were diagnosed more quickly (median 2-12 days quicker). The 90th percentile diagnostic interval was 84-126 days longer in diagnostic-led patients. In the diagnostic-led group, increasing comorbid burden was consistently associated with longer diagnostic intervals and being >70 was associated with a shorter interval at the 90th percentile in Manitoba and Ontario. There was no evidence of a clear rural or low socioeconomic status effect and patients without a primary care physician had shorter intervals. In the screen-led group, patients age 40-49 and those in the medium or low income rural areas waited longer for a diagnosis. Conclusion/Implications Diagnostic wait times differ across Canada and are variably associated with comorbidity, age, area-level socioeconomic status and rural residence. These results point to practice and system-level effects that warrant further study.

Introduction Breast cancer screening is intended to identify cancer in early stages when prognosis is better and treatments less invasive. Objectives and Approach We 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. Results The 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/Implications The 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.

ABSTRACT Objective CanIMPACT 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. Approach Our 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. Results Common 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. Conclusions We 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.

Patient engagement (PE) is not well defined and little guidance is available to those attempting to employ PE in decision-making relevant to health system improvement. After completing a 2-year PE project, overseen by an Advisory Committee, our objectives were: 1) to evaluate how effectively the project team engaged the Advisory Committee, 2) to examine how Advisory Committee members perceived PE and their role in PE, and 3) to identify barriers and facilitators to PE in order to improve future efforts. Five members of the Advisory Committee completed semi-structured interviews post-project about their experiences. Thematic analysis identified four themes: the approach, participant contributions, participant understanding of PE, and barriers and facilitators to PE. The use of a committee approach was considered beneficial, providing an opportunity to discuss the project in depth, contributing to relationship building, and helping move the project forward. The social aspect of the committee approach was an important part of the engagement process. Participants felt they contributed primarily by participating in discussion, yet could not identify specific contributions they had made. All participants agreed that the experience was meaningful but not profound with regard to how it would impact their engagement, or their engagement of others, in the future. Although experiences were highly subjective, this study suggests that the act of participating in PE has meaning in and of itself to those involved, independent of the activities and/or outcomes of that participation, reflecting a broader public value that PE is an important component of transparent, accountable health systems.