Using Integrated Real-World Data in Alberta to Develop Personalized Follow-up Care Pathways for Cancer Survivors
December 13, 2019

This study will provide an integrated data source to inform follow-up clinical care pathways for cancer survivors in Alberta

The odds of long-term recovery from cancer have never been better. In the 1940s only 25% of Canadians survived a cancer diagnosis, compared with 60% today.1 Simultaneously, cancer incidence continues to rise, with nearly half of all Canadians expected to develop cancer in their lifetime. 1 Together, these trends point to a rapidly expanding population of cancer survivors in Alberta. While many people will complete their primary cancer treatment and return to their previous level of health and wellbeing, an estimated 25% will experience chronic health issues following their primary cancer and/or cancer treatment. New approaches are needed for follow-up care to mitigate the costs of survivorship on patients and the health system.

The management of multiple comorbidities associated with cancer survivorship is costly and resource intensive. In fact, the costs of cancer survival may exceed the cost of primary treatment. Currently, only a few studies have examined the long-term health effects and costs of surviving cancer in a real-world setting. 2 Cancer survivors report numerous unmet physical, psychosocial and functional needs, which negatively impacts quality of life and reduces work productivity.

Survivorship is also associated with a range of chronic health issues, from debilitating fatigue and depression to an increased risk of cardiovascular disease and secondary cancers. For example, a study co-authored by Dr. Winson Cheung found that cancer survivors have a higher risk of mortality and heart failure following acute myocardial infarction.3 In order to mitigate the rising costs, early interventions are needed for populations at heightened risk of chronic and long-term health events associated with cancer survival.

Rising health care costs and the transition to value-based health care delivery has led to the development of clinical care pathways in oncology. Clinical care pathways provide detailed protocols for the delivery of cancer care based upon cancer type and stage. In recognition of the increasing number of cancer survivors, several countries have pursued extending these clinical care pathways to include long-term follow-up care.4 In England, the National Cancer Survivorship Initiative (NCSI) tested stratified follow-up care delivery based upon the available data and patient reported needs. Implementing stratified follow-up pathways is projected to save £90 million pounds in 2013 ($144,843,750 CAD) over 5 years.5

Study Objectives

The primary objective of this research proposal is the development of an integrated data source, which can be used to guide the development of personalized follow-up care pathways for cancer survivors in Alberta. This objective will be informed by investigating whether chronic, debilitating conditions such as cardiovascular disease occur at higher rates in cancer survivors in Alberta. To supplement information in the integrated data source, secondary objectives of the study are to:

  1. Determine the cumulative costs of chronic conditions, considering both direct (healthcare utilization) and indirect (work productivity loss) costs of illness for patients surviving the 21 most prevalent cancer types;
  2. Examine quality of life (QoL) in cancer survivors through existing data collected through the CancerControl Alberta and caregiver burden via a proposed pilot data collection program

The proposed research study will be conducted in three phases corresponding to each research objective:

  • Phase I – Utilizing existing administrative health data sources in Alberta to examine the long-term treatment related effects in cancer survivors: data on inpatient hospitalizations, ambulatory care, and physician visits will be derived from their respective datasets from Alberta Health to identify conditions associated with cancer treatment, and compared to age-matched population controls without cancer.
  • Phase II – Linking income and QoL data to determine the cost of productivity loss associated with cancer in Alberta: individual-level income data will be requested from the Government of Alberta – Office of Information and Statistics (OSI) to be linked to the administrative health data to determine the indirect cost of illness, in terms of work productivity. The direct cost of illness (treatment, ambulatory care, inpatient hospitalization and physician claims) will be quantified using datasets from Alberta Health. Similarly, QoL and other patient chart data (e.g. treatment) currently collected from patients with cancer by CancerControl Alberta will be linked to the administrative health datasets to examine QoL in patients with cancer.
  • Phase III Prospective data collection on caregiver burden: to more accurately quantify costs in cancer survivors, caregiver burden must also be considered. As these patient/caregiver reported outcomes are not routinely collected data, a pilot program in collaboration with AHS cancer clinics will be conducted. Following consultation with the Cancer SCN, a validated, app-administered tool will be chosen and implemented in one or more cancer clinics to collect data on caregiver burden to link to individual patients in the integrated data source.

Innovation and Impact

This study offers a proof-of-concept for combining data sources in Alberta, housed within different Ministries, to provide unique insights into the societal and patient perspectives of lifetime cancer burden. Alberta is Canada’s fourth largest province providing universal healthcare coverage for approximately 4.2 million people. Uniquely, Alberta has a single health authority, and as a result, has province-wide data sets including the Discharge Abstract Database, the National Ambulatory Care Reporting System, the Pharmaceutical Information Network (PIN) and Alberta Blue Cross datasets, and Laboratory Services data. Real-world data sources from Statistics Canada, the Government of Alberta – Office of Statistics and Information (OSI), and/or benefits data from Alberta Blue Cross can potentially be linked to Alberta Health datasets.

The end-product of the proposed research program will be an integrated data source to inform follow-up clinical care pathways for cancer survivors in Alberta. In addition, if successful, the pilot data collection program could be implemented systematically throughout Alberta, such that caregiver burden becomes part of routine data collection in oncology patients. Through ongoing collaboration with Cancer SCN at AHS and Alberta Health, the proposed program of research has the potential to significantly increase our understanding of the long-term economic impact of cancer among survivors across various socio-demographic groups and inform ongoing or future policy efforts.

About Medlior Health Outcomes Research

Medlior has developed a strong reputation for providing Health Outcomes Research for clients in Canada, United States, and the United Kingdom. As an independent, Calgary-based research organization, Medlior is ideally situated to partner with the Cancer SCN to access and integrate patient data from various sources. Medlior’s experience with analyzing administrative data stems from our consultants’ appointments and affiliations with Alberta Health Services and the University of Calgary. The Medlior team includes health-system trained epidemiologists, biostatisticians and health economists with analytical expertise in utilizing provincial and national administrative health datasets to examine a variety of applied health research topics, including chronic disease burden, health outcomes and health services utilization. The Medlior team also includes clinical expertise and those with previous research experience in oncology and cancer epidemiology. In combining analytical and clinical expertise with a wealth of knowledge about health system datasets, Medlior delivers high-quality reports that present the research findings in a clinically meaningful context while considering important limitations associated with administrative data. In 2019, Medlior was selected as a recipient of the Women’s Entrepreneurship Fund from the Government of Canada to expand work in real world evidence to further inform healthcare decision-making and positively impact patient care.

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