Early experiences of deemed consent legislation for organ donation in Nova Scotia: a qualitative study.

PURPOSE: In 2021, Nova Scotia, Canada, became the first jurisdiction in North America to adopt a deemed consent organ donation system under its revised Human Organ and Tissue Donation Act. This study sought to understand the early experiences of program staff and clinicians involved in implementing this legislation. METHODS: We conducted semistructured interviews with members of the provincial organ donation program and intensive care unit and emergency department clinicians (n = 14). Two investigators coded transcripts of interviews, then categorized the coded data into themes. RESULTS: We identified four key themes: 1) legislation has limited impact on daily practice; 2) legislation does not address existing barriers; 3) legislation aids conversations with donor families; and 4) legislation should provide more autonomy to patients and families, not less. CONCLUSION: Deemed consent legislation had limited impact on clinician's day-to-day practices, because of lack of infrastructure changes and infrequent donation opportunities. Nevertheless, participants felt the introduction of deemed consent in Nova Scotia eased conversations between families of potential donors and clinicians. These findings should be used to inform ongoing implementation of deemed consent and be considered by those contemplating similar legislative changes.

RéSUMé: OBJECTIF: En 2021, la Nouvelle-Écosse, au Canada, est devenue la première juridiction nord-américaine à adopter un système de don d'organes avec consentement présumé dans le cadre de sa version révisée de la Loi sur le don d'organes et de tissus humains. Cette étude visait à comprendre les premières expériences du personnel du programme et des clinicien·nes participant à la mise en œuvre de cette loi. MéTHODE: Nous avons mené des entrevues semi-structurées avec des membres du programme provincial de don d'organes, ainsi qu'avec des clinicien·nes de l'unité de soins intensifs et des services d'urgence (n = 14). Deux personnes de l'équipe de recherche ont codé les transcriptions des entrevues, puis ont classé les données codées en thèmes. RéSULTATS: Nous avons identifié quatre thèmes clés : 1) la législation a un impact limité sur la pratique quotidienne; 2) la législation ne s'attaque pas aux obstacles existants; 3) la législation facilite les conversations avec les familles des donneurs et donneuses; et 4) la législation devrait accorder plus d'autonomie aux patient·es et aux familles, et non moins. CONCLUSION: La législation sur la présomption de consentement a eu une incidence limitée sur les pratiques quotidiennes des cliniciennes et cliniciens, en raison du manque de changements à l'infrastructure et des possibilités de dons peu fréquentes. Néanmoins, les participant·es ont estimé que l'introduction du consentement présumé en Nouvelle-Écosse facilitait les conversations entre les familles des donneurs et donneuses potentiel·les et les clinicien·nes. Ces constatations devraient être utilisées pour éclairer la mise en œuvre continue de la présomption de consentement et être prises en compte par les autorités qui envisagent des modifications législatives similaires.

Navigation programs to support community-dwelling individuals with life-limiting illness: determinants of implementation.

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.

How do navigation programs address the needs of those living in the community with advanced, life-limiting Illness? A realist evaluation of programs in Canada.

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.

Defining sustainability in practice: views from implementing real-world innovations in health care.

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.

Patient and caregiver perspectives on early identification for advance care planning in primary healthcare settings.

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.

Adherence to quality breast cancer survivorship care in four Canadian provinces: a CanIMPACT retrospective cohort study.

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.

Making It Happen: Middle Managers' Roles in Innovation Implementation in Health Care.

BACKGROUND: Middle managers are given scant attention in the implementation literature in health care, where the focus is on senior leaders and frontline clinicians. AIMS: To empirically examine the role of middle managers relevant to innovation implementation and how middle managers experience the implementation process. METHODS: A qualitative study was conducted using the methods of grounded theory. Data were collected through semistructured interviews with middle managers (N = 15) in Nova Scotia and New Brunswick, Canada. Participants were purposively sampled, based on their involvement in implementation initiatives and to obtain variation in manager characteristics. Data were collected and analyzed concurrently, using an inductive constant comparative approach. Data collection and analysis continued until theoretical saturation was reached. RESULTS: Middle managers see themselves as being responsible for making implementation happen in their programs and services. As a result, they carry out five roles related to implementation: planner, coordinator, facilitator, motivator, and evaluator. However, the data also revealed two determinants of middle managers' role in implementation, which they must negotiate to fulfill their specific implementation roles and activities: (1) They perform many other roles and responsibilities within their organizations, both clinical and managerial in nature, and (2) they have limited decision-making power with respect to implementation and must work within the parameters set by upper levels of the organization. LINKING EVIDENCE TO ACTION: Middle managers play an important role in translating adoption decisions into on-the-ground implementation. Optimizing their capacity to fulfill this role may be key to improving innovation implementation in healthcare organizations.

Primary care physician use across the breast cancer care continuum: CanIMPACT study using Canadian administrative data.

OBJECTIVE: To describe primary care physician (PCP) use and continuity of PCP care across the breast cancer care continuum. DESIGN: Population-based, retrospective cohort study using provincial cancer registries linked to health administrative databases. SETTING: British Columbia, Manitoba, and Ontario. PARTICIPANTS: All women with incident invasive breast cancer from 2007 to 2012 in Manitoba and Ontario and from 2007 to 2011 in British Columbia. MAIN OUTCOME MEASURES: The number and proportions of visits to PCPs were determined. Continuity of care was measured using the Usual Provider of Care index calculated as the proportion of visits to the most-often-visited PCP in the 6 to 30 months before a breast cancer diagnosis (baseline) and from 1 to 3 years following a breast cancer diagnosis (survivorship). RESULTS: More than three-quarters of patients visited their PCPs 2 or more times during the breast cancer diagnostic period, and more than 80% of patients had at least 1 PCP visit during breast cancer adjuvant treatment. Contact with the PCP decreased over time during breast cancer survivorship. Of the 3 phases, women appeared to be most likely to not have PCP contact during adjuvant treatment, with 10.7% (Ontario) to 18.7% (British Columbia) of women having no PCP visits during this phase. However, a sizable minority of women had at least monthly visits during the treatment phase, particularly in Manitoba and Ontario, where approximately a quarter of women saw a PCP at least monthly. We observed higher continuity of care with PCPs in survivorship (compared with baseline) in all provinces. CONCLUSION: Primary care physicians were generally involved throughout the breast cancer care continuum, but the level of involvement varied across care phases and by province. Future interventions will aim to further integrate primary and oncology care.

The Women@Heart NS Pilot Project: Rationale and Design of a Community-Based Peer Support Program for Women Living With Heart Disease in Nova Scotia.

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.

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.

Exploring Men's Experiences with Follow-Up Care following Primary Treatment for Prostate Cancer in Atlantic Canada: A Qualitative Study.

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.

Views of leaders in under-represented and equity-denied communities on organ and tissue donation in Nova Scotia, Canada, in light of the Human Organ and Tissue Donation Act: a qualitative descriptive study.

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.

Factors Associated with the Breast Cancer Diagnostic Interval across Five Canadian Provinces: A CanIMPACT Retrospective Cohort Study.

The cancer diagnostic process can be protracted, and it is a time of great anxiety for patients. The objective of this study was to examine inter- and intra-provincial variation in diagnostic intervals and explore factors related to the variation. This was a multi-province retrospective cohort study using linked administrative health databases. All females with a diagnosis of histologically confirmed invasive breast cancer in British Columbia (2007-2010), Manitoba (2007-2011), Ontario (2007-2010), Nova Scotia (2007-2012), and Alberta (2004-2010) were included. The start of the diagnostic interval was determined using algorithms specific to whether the patient's cancer was detected through screening. We used multivariable quantile regression analyses to assess the association between demographic, clinical and healthcare utilization factors with the diagnostic interval outcome. We found significant inter- and intra-provincial variation in the breast cancer diagnostic interval and by screen-detection status; patients who presented symptomatically had longer intervals than screen-detected patients. Interprovincial diagnostic interval variation was 17 and 16 days for screen- and symptom-detected patients, respectively, at the median, and 14 and 41 days, respectively, at the 90th percentile. There was an association of longer diagnostic intervals with increasing comorbid disease in all provinces in non-screen-detected patients but not screen-detected. Longer intervals were observed across most provinces in screen-detected patients living in rural areas. Having a regular primary care provider was not associated with a shorter diagnostic interval. Our results highlight important findings regarding the length of the breast cancer diagnostic interval, its variation within and across provinces, and its association with comorbid disease and rurality. We conclude that diagnostic processes can be context specific, and more attention should be paid to developing tailored processes so that equitable access to a timely diagnosis can be achieved.

Impact of comorbidity and healthcare utilization on colorectal cancer stage at diagnosis: literature review.

PURPOSE: Individuals diagnosed with cancer close to death have low access to enrollment in palliative care programs. The purpose of this literature review was to assess the usefulness of pre-diagnostic comorbidity and healthcare utilization as indicators of late-stage colorectal cancer (CRC) diagnosis, to help with early identification of individuals who may benefit from palliative care. METHODS: A literature search was conducted in relevant databases using title/abstract terms which included "cancer," "stage," "diagnosis," "determinants," "predictors," and "associated." Included studies examined whether comorbidity and/or healthcare utilization had an impact on the stage at which CRC was diagnosed. A standardized data abstraction form was used to assess the eligibility of each study. Thirteen articles were included in the literature review. These studies were assessed and synthesized using qualitative methodology. RESULTS: We found much heterogeneity among study variables. The findings of this literature review point to the presence of comorbidity and non-emergent healthcare utilization as having no association with late-stage diagnosis. Conversely, emergency room presentation (ERP) was associated with late-stage diagnosis. CONCLUSIONS: The results of this literature review did not find strong evidence to suggest that comorbidity and healthcare utilization are potential indicators of late-stage diagnosis. However, ERP may be useful as a flag for consideration of prompt referral to palliative care. Additional research is required to identify potential indicators of late-stage diagnosis that may be available in administrative databases, particularly in the area of healthcare utilization.

A team approach to improving colorectal cancer services using administrative health data.

BACKGROUND: Colorectal cancer (CRC) is the third most commonly diagnosed cancer in Canada and accounts for 11.9% of all cancer-related mortality. Fortunately, previous studies have provided evidence of improved outcomes from access to timely and appropriate health services along the disease trajectory in CRC. As a result, the CIHR/CCNS Team in Access to Colorectal Cancer Services in Nova Scotia (Team ACCESS) was created to build colorectal cancer (CRC) research capacity in Nova Scotia (NS) and to study access to and quality of CRC services along the entire continuum of cancer care. OBJECTIVES: The objectives of this paper are to: 1) provide a detailed description of the methodologies employed across the various studies being conducted by Team ACCESS; 2) demonstrate how administrative health data can be used to evaluate access and quality in CRC services; and 3) provide an example of an interdisciplinary team approach to addressing health service delivery issues. METHODS: All patients diagnosed with CRC in NS between 2001 and 2005 were identified through the Nova Scotia Cancer Registry (NSCR) and staged using the Collaborative Stage Data Collection System. Using administrative databases that were linked at the patient level, Team ACCESS created a retrospective longitudinal cohort with comprehensive demographic, clinical, and healthcare utilization data. These data were used to examine access to and quality of CRC services in NS, as well as factors affecting access to and quality of care, at various transition points along the continuum of care. Team ACCESS has also implemented integrated knowledge translation strategies targeting policy- and decision- makers. DISCUSSION: The development of Team ACCESS represents a unique approach to CRC research. We anticipate that the skills, tools, and knowledge generated from our work will also advance the study of other cancer disease sites in NS. Given the increasing prevalence of cancer, and with national and provincial funding agencies promoting collaborative research through increased funding for research team development, the work carried out by Team ACCESS is important in the Canadian context and exemplifies how a team approach is essential to comprehensively addressing issues surrounding not only cancer, but other chronic diseases in Canada.

A novel approach to surface electromyography: an exploratory study of electrode-pair selection based on signal characteristics.

A 3×4 electrode array was placed over each of seven muscles and surface electromyography (sEMG) data were collected during isometric contractions. For each array, nine bipolar electrode pairs were formed off-line and sEMG parameters were calculated and evaluated based on repeatability across trials and comparison to an anatomically placed electrode pair. The use of time-domain parameters for the selection of an electrode pair from within a grid-like array may improve upon existing electrode placement methodologies.

Understanding Cancer Survivors' Needs and Experiences Returning to Work Post-Treatment: A Longitudinal Qualitative Study.

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.

Risk Stratification and Cancer Follow-Up: Towards More Personalized Post-Treatment Care in 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.

Mapping Canadian Data Assets to Generate Real-World Evidence: Lessons Learned from Canadian Real-World Evidence for Value of Cancer Drugs (CanREValue) Collaboration's RWE Data Working Group.

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.

Factors affecting access to administrative health data for research in Canada: a study protocol.

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.

What Matters in Cancer Survivorship Research? A Suite of Stakeholder-Relevant Outcomes.

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.