Research data use in a digital society: a deliberative public engagement.

Background: Sources of public and private data and ways to link them continue to evolve. This offers new opportunities for research, and new reasons for data-holding organisations to form partnerships. While research using these data can be beneficial, there is also a potential for negative consequences for some individuals or groups, including unintended or unanticipated effects.

Re-Exposure to Culprit Medication Following Adverse Drug Event Diagnosis in Canadian Emergency Department Patients: A Cohort Study.

Purpose: The magnitude of repeat exposures to culprit medications after hospital discharge is not well studied. We combined prospective cohort data with administrative health data to understand the frequency of repeat exposures to culprit medications after discharge and the risk factors for their occurrence.

Methods: This was a retrospective analysis of three prospective cohorts of patients who presented to the hospital with an adverse drug event in British Columbia, from 2008 to 2015 (n = 849).

Fetal alcohol syndrome and population level health care usage in British Columbia, Canada.

Background: The literature indicates that youth with Fetal Alcohol Syndrome (FAS) may experience high rates of both physical and mental health issues compared to youth without FAS. However, there is little population level health data available for youth with FAS, particularly for youth transitioning from pediatric to adult healthcare services.

Objective: The objective of this study was to compare health care usage of youth with Fetal Alcohol Syndrome to youth without any intellectual/developmental disabilities (IDD).

Prescriptions for Antipsychotics: Youth with Intellectual/Developmental Disabilities Compared to Youth without Intellectual/Developmental Disabilities.

Purpose: The purpose of this study was to compare antipsychotic use by youth with intellectual/developmental disabilities to youth without IDD as they transitioned from pediatric to adult health care services. In addition, antipsychotic use was compared between youth with different types of IDD (autism, Fetal Alcohol Syndrome, Down syndrome and 'other').

Methods: Population level administrative health data was used to compare the dispensing of antipsychotics for youth aged 15 to 24 years with and without IDD, between 2010 and 2019.

Validating use of diagnostic codes in Canadian administrative data for identification of adverse drug events.

Aims: While diagnostic codes from administrative health data might be a valuable source to identify adverse drug events (ADEs), their ability to identify unintended harms remains unclear. We validated claims-based diagnosis codes for ADEs based on events identified in a prospective cohort study and assessed whether key attributes predicted their documentation in administrative data.

Methods: This was a retrospective analysis of 3 prospective cohorts in British Columbia, from 2008 to 2015 (n = 13 969).

Validating methods used to identify non-adherence adverse drug events in Canadian administrative health data.

Aims: Medication non-adherence is a type of adverse drug event that can lead to untreated and exacerbated chronic illness, and that drives healthcare utilization. Research using medication claims data has attempted to identify instances of medication non-adherence using the proportion of days covered or by examining gaps between medication refills. We sought to validate these measures compared to a gold standard diagnosis of non-adherence made in hospital.

The Use of Medically Required Dental Services by Youth with Intellectual/Developmental Disabilities in British Columbia, Canada.

Introduction: The literature indicates that youth with intellectual/developmental disabilities (IDD), such as Down syndrome or autism, have poor oral health. A number of factors influence their oral health, including the use of medically required dental treatments.

Methods: This paper describes the first use of population-level administrative health data to examine the use of medically required dental services by youth with IDD compared with youth without IDD in Canada.

Population-level use of gynecological health services by female youth with intellectual/developmental disabilities in British Columbia Canada.

Background: There is evidence that female youth with intellectual/developmental disabilities (IDD) experience poorer gynecological care compared to female youth without disabilities.

Objective: The objective of this study was to obtain baseline data on visits to a health care provider for a gynecological issue for females with IDD and compare that information to the experiences of female youth without IDD.

Methods: This study is a retrospective cohort study using population-level administrative health data from 2010 to 2019 for females aged 15-24 years, with and without IDD.

Population level administrative data evidence of visits to the emergency department by youth with intellectual/developmental disabilities in BC, Canada.

Introduction: The literature indicates that youth with intellectual/developmental disabilities (IDD) have poor health and that access to health services decreases as they transition from pediatric to adult services. At the same time their use of emergency department services increases. The objective of this study was to compare use of emergency department services by youth with IDD to youth without IDD, with particular emphasis on the transition period from pediatric to adult health care services.

Declining Comprehensiveness of Services Delivered by Canadian Family Physicians Is Not Driven by Early-Career Physicians.

We describe changes in the comprehensiveness of services delivered by family physicians in 4 Canadian provinces (British Columbia, Manitoba, Ontario, Nova Scotia) during the periods 1999-2000 and 2017-2018 and explore if changes differ by years in practice. We measured comprehensiveness using province-wide billing data across 7 settings (home, long-term care, emergency department, hospital, obstetrics, surgical assistance, anesthesiology) and 7 service areas (pre/postnatal care, Papanicolaou [Pap] testing, mental health, substance use, cancer care, minor surgery, palliative home visits). Comprehensiveness declined in all provinces, with greater changes in number of service settings than service areas.

Coping Behaviors and Health Status during the COVID-19 Pandemic among Caregivers of Assisted Living Residents in Western Canada.

Objectives: To examine the prevalence of coping behaviors during the first 2 waves of the COVID-19 pandemic among caregivers of assisted living residents and variation in these behaviors by caregiver gender and mental health.

Design: Cross-sectional and longitudinal survey.

Setting And Participants: Family/friend caregivers of assisted living residents in Alberta and British Columbia.

Initial health care costs for COVID-19 in British Columbia and Ontario, Canada: an interprovincial population-based cohort study.

Background: COVID-19 imposed substantial health and economic burdens. Comprehensive population-based estimates of health care costs for COVID-19 are essential for planning and policy evaluation. We estimated publicly funded health care costs in 2 Canadian provinces during the pandemic's first wave.

Caregivers' Concerns About Assisted Living Residents' Mental Health During the COVID-19 Pandemic: A Cross-Sectional Survey Study.

Family or friend caregivers' concerns about assisted living (AL) residents' mental health are reflective of poor resident and caregiver mental health. COVID-19-related visiting restrictions increased caregiver concerns, but research on these issues in AL is limited. Using web-based surveys with 673 caregivers of AL residents in Western Canada, we assessed the prevalence and correlates of moderate to severe caregiver concerns about residents' depressed mood, loneliness, and anxiety in the 3 months before and after the start of the COVID-19 pandemic.

Prevalence and correlates of anxiety and depression in caregivers to assisted living residents during COVID-19: a cross-sectional study.

Background: Family and friend caregivers play significant roles in advocating for and ensuring quality health and social care of residents in Assisted Living (AL) homes. However, little is known about how the COVID-19 pandemic and related visitor restrictions affected their health and mental well-being. We examined the prevalence and correlates of anxiety and depressive symptoms among caregivers of AL residents during the initial wave of COVID-19 in two Canadian provinces.

Characterizing people with frequent emergency department visits and substance use: a retrospective cohort study of linked administrative data in Ontario, Alberta, and B.C., Canada.

Background: Substance use is common among people who visit emergency departments (EDs) frequently. We aimed to characterize subgroups within this cohort to better understand care needs/gaps, and generalizability of characteristics in three Canadian provinces.

Methods: This was a retrospective cohort study (April 1, 2013 to March 31, 2016) of ED patients in Ontario, Alberta, and British Columbia (B.

Stage-Specific Risk of Breast Cancer among Canadian Immigrant and Non-Immigrant Women.

Background: Breast cancer screening utilization varies across immigrant and non-immigrant populations. Recent studies have also suggested that some immigrant populations in Canada present with a higher frequency of later-stage breast cancer compared to non-immigrants. Our study aimed to augment prior research by presenting breast cancer stage distributions and stage-specific breast cancer incidence rates for immigrant and non-immigrants in British Columbia, Canada.

Subgroups of people who make frequent emergency department visits in Ontario and Alberta: a retrospective cohort study.

Background: The population that visits emergency departments frequently is heterogeneous and at high risk for mortality. This study aimed to characterize these patients in Ontario and Alberta, compare them with controls who do not visit emergency departments frequently, and identify subgroups.

Methods: This was a retrospective cohort study that captured patients in Ontario or Alberta from fiscal years 2011/12 to 2015/16 in the Dynamic Cohort from the Canadian Institute for Health Information, which defined people with frequent visits to the emergency department in the top 10% of annual visits and randomly selected controls from the bottom 90%.

People who make frequent emergency department visits based on persistence of frequent use in Ontario and Alberta: a retrospective cohort study.

Background: The factors that underlie persistent frequent visits to the emergency department are poorly understood. This study aimed to characterize people who visit emergency departments frequently in Ontario and Alberta, by number of years of frequent use.

Methods: This was a retrospective cohort study aimed at capturing information about patients visiting emergency departments in Ontario and Alberta, Canada, from Apr.

How long does it take patients to find a new primary care physician when theirs retires: a population-based, longitudinal study.

Background: The retirement of a family physician can represent a challenge in accessibility and continuity of care for patients. In this population-based, longitudinal cohort study, we assess whether and how long it takes for patients to find a new majority source of primary care (MSOC) when theirs retires, and we investigate the effect of demographic and clinical characteristics on this process.

Methods: We used provincial health insurance records to identify the complete cohort of patients whose majority source of care left clinical practice in either 2007/2008 or 2008/2009 and then calculated the number of days between their last visit with their original MSOC and their first visit with their new one.

Characteristics of frequent emergency department users in British Columbia, Canada: a retrospective analysis.

Background: Frequent emergency department users disproportionately account for rising health care costs. We aimed to characterize frequent emergency department users in British Columbia, Canada.

Methods: We performed a retrospective analysis using health administrative databases.

The impact of public coverage of newer hepatitis C medications on utilization, adherence, and costs in British Columbia.

Background: Sofosbuvir and ledipasvir-sofosbuvir are both newer direct-acting antiviral agents for the treatment of hepatitis C. The high list prices for both drugs have led to concern about the budget impact for public drug coverage programs. Therefore, we studied the impact of public prescription drug coverage for both drugs on utilization, adherence, and public and private expenditure in British Columbia, Canada.

Essential requirements for establishing and operating data trusts: practical guidance co-developed by representatives from fifteen canadian organizations and initiatives.

Introduction: Increasingly, the label "data trust" is being applied to repeatable mechanisms or approaches to sharing data in a timely, fair, safe, and equitable way. However, there is an absence of practical guidance regarding how to establish and operate a data trust.

Aim And Approach: In December 2019, the Canadian Institute for Health Information and the Vector Institute for Artificial Intelligence convened a working meeting of 19 people representing 15 Canadian organizations/initiatives involved in data sharing, most of which focus on public sector health data.