Evaluation of an advisory committee as a model for patient engagement

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

Factors Affecting Access to Administrative Health Data for Research in Canada: A Study Protocol

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

Understanding how cancer survivors’ needs and experiences after treatment impact their health care utilization: a survey-administrative health data linkage study.

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

Factors associated with the breast cancer diagnostic interval across five Canadian provinces: a CanIMPACT study

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

Lessons Learned: It Takes a Village to Understand Inter-Sectoral Care Using Administrative Data across Jurisdictions

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

Adherence to Breast Cancer Follow-up Care Guidelines for Vulnerable Populations in four Canadian provinces: a CanIMPACT study

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

Adherence to Follow-up Care Guidelines for Breast Cancer Survivors in four Canadian provinces: a CanIMPACT study

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

Harnessing the power of data linkage to enrich the cancer research ecosystem in Canada.

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

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

Factors Affecting Access to Administrative Health Data for Research in Canada: A Study Protocol

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