Monitoring disease burden and preventive behavior with data linkage: cervical cancer among aboriginal people in Manitoba, Canada

Young, T. Kue; Kliewer, Erich V.; Blanchard, Janice; Mayer, Teresa

doi:10.2105/ajph.90.9.1466

Cited by 48 publications

(12 citation statements)

References 13 publications

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“…Data-sharing involves information moving from one organisation or department to another, whereas data-linkage is defined as: “the bringing together from two or more different sources, data that relate to the same individual, family, place or event” [11]. Increasing amounts of health research are conducted through data-linkage, for example health related records have been linked with population registries [12], alcohol and drugs services [11], genealogical registries [11], the census [13, 14]), the education system [15] and the prison service [16]. Such linkages have enabled, among other things, examination of relationships between social factors and health or access to health services.…”

Section: Introductionmentioning

confidence: 99%

Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies

et al. 2016

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BackgroundThe past 10 years have witnessed a significant growth in sharing of health data for secondary uses. Alongside this there has been growing interest in the public acceptability of data sharing and data linkage practices. Public acceptance is recognised as crucial for ensuring the legitimacy of current practices and systems of governance. Given the growing international interest in this area this systematic review and thematic synthesis represents a timely review of current evidence. It highlights the key factors influencing public responses as well as important areas for further research.MethodsThis paper reports a systematic review and thematic synthesis of qualitative studies examining public attitudes towards the sharing or linkage of health data for research purposes. Twenty-five studies were included in the review. The included studies were conducted primarily in the UK and North America, with one study set in Japan, another in Sweden and one in multiple countries. The included studies were conducted between 1999 and 2013 (eight studies selected for inclusion did not report data collection dates). The qualitative methods represented in the studies included focus groups, interviews, deliberative events, dialogue workshops and asynchronous online interviews.ResultsKey themes identified across the corpus of studies related to the conditions necessary for public support/acceptability, areas of public concern and implications for future research. The results identify a growing body of evidence pointing towards widespread general—though conditional—support for data linkage and data sharing for research purposes. Whilst a variety of concerns were raised (e.g. relating to confidentiality, individuals’ control over their data, uses and abuses of data and potential harms arising) in cases where participants perceived there to be actual or potential public benefits from research and had trust in the individuals or organisations conducting and/or overseeing data linkage/sharing, they were generally supportive. The studies also find current low levels of awareness about existing practices and uses of data.ConclusionsWhilst the results indicate widespread (conditional) public support for data sharing and linkage for research purposes, a range of concerns exist. In order to ensure public support for future research uses of data greater awareness raising combined with opportunities for public engagement and deliberation are needed. This will be essential for ensuring the legitimacy of future health informatics research and avoiding further public controversy.

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Section: Introductionmentioning

confidence: 99%

Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies

et al. 2016

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“…In Canada, previous studies show an increase in cancer incidence in FN people compared to non-FN people, however this observed trend seems to be cancer site specific [5–10]. Cancer stage at diagnosis is an important prognostic indicator, and evidence suggests FN people are more likely to be diagnosed at later stages than non-FN Canadians [11–13].…”

Section: Introductionmentioning

confidence: 99%

Comparing cancer incidence, stage at diagnosis and outcomes of First Nations and all other Manitobans: a retrospective analysis

et al. 2019

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BackgroundGlobally, epidemiological evidence suggests cancer incidence and outcomes among Indigenous peoples are a growing concern. Although historically cancer among First Nations (FN) peoples in Canada was relatively unknown, recent epidemiological evidence reveals a widening of cancer related disparities. However evidence at the population level is limited. The aim of this study was to explore cancer incidence, stage at diagnosis, and outcomes among status FN peoples in comparison with all other Manitobans (AOM).MethodsAll cancers diagnosed between April 1, 2004 and March 31, 2011 were linked with the Indian Registry System and five provincial healthcare databases to compare differences in characteristics, cancer incidence, and stage at diagnosis and mortality of the FN and AOM cohorts. Cox proportional hazard regression models were used to examine mortality.ResultsThe FN cohort was significantly younger, with higher comorbidities than AOM. A higher proportion of FN people were diagnosed with cancer at stages III (18.7% vs. 15.4%) and IV (22.4% vs. 19.9%). Cancer incidence was significantly lower in the FN cohort, however, there were no significant differences between the two cohorts after adjusting for age, sex, income and area of residence. No significant trends in cancer incidence were identified in either cohort over time. Mortality was generally higher in the FN cohort.ConclusionsDespite similar cancer incidence, FN peoples in Manitoba experience poorer survival. The underlying causes of these disparities are not yet understood, particularly in relation to the impact of colonization and other determinants of health.

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“…The prevalence of these strains can vary by socioeconomic factors, including geography and ethnicity [ 2 , 3 ]. There are well-documented inequities in cancer prevention, disease burden, and subsequent treatment, for First Nation (FN), Inuit, and Métis peoples in Canada [ 2 , 4 – 10 ]. While acknowledging that there is heterogeneity across and within each of these peoples, we respectfully refer to them ‘Indigenous unless otherwise specified.…”

Section: Introductionmentioning

confidence: 99%

Barriers, supports, and effective interventions for uptake of human papillomavirus- and other vaccines within global and Canadian Indigenous peoples: a systematic review protocol

et al. 2018

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BackgroundDespite the existence of human papilloma virus (HPV) vaccines with demonstrated safety and effectiveness and funded HPV vaccination programs, coverage rates are persistently lower and cervical cancer burden higher among Canadian Indigenous peoples. Barriers and supports to HPV vaccination in Indigenous peoples have not been systematically documented, nor have interventions to increase uptake in this population. This protocol aims to appraise the literature in Canadian and global Indigenous peoples, relating to documented barriers and supports to vaccination and interventions to increase acceptability/uptake or reduce hesitancy of vaccination. Although HPV vaccination is the primary focus, we anticipate only a small number of relevant studies to emerge from the search and will, therefore, employ a broad search strategy to capture literature related to both HPV vaccination and vaccination in general in global Indigenous peoples.MethodsEligible studies will include global Indigenous peoples and discuss barriers or supports and/or interventions to improve uptake or to reduce hesitancy, for the HPV vaccine and/or other vaccines. Primary outcomes are documented barriers or supports or interventions. All study designs meeting inclusion criteria will be considered, without restricting by language, location, or data type. We will use an a priori search strategy, comprised of key words and controlled vocabulary terms, developed in consultation with an academic librarian, and reviewed by a second academic librarian using the PRESS checklist. We will search several electronic databases from date of inception, without restrictions. A pre-defined group of global Indigenous websites will be reviewed for relevant gray literature. Bibliographic searches will be conducted for all included studies to identify relevant reviews. Data analysis will include an inductive, qualitative, thematic synthesis and a quantitative analysis of measured barriers and supports, as well as a descriptive synthesis and quantitative summary of measures for interventions.DiscussionTo our knowledge, this study will contribute the first systematic review of documented barriers, supports, and interventions for vaccination in general and for HPV vaccination. The results of this study are expected to inform future research, policies, programs, and community-driven initiatives to enhance acceptability and uptake of HPV vaccination among Indigenous peoples.Systematic review registrationPROSPERO Registration Number: CRD42017048844Electronic supplementary materialThe online version of this article (10.1186/s13643-018-0692-y) contains supplementary material, which is available to authorized users.

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Monitoring disease burden and preventive behavior with data linkage: cervical cancer among aboriginal people in Manitoba, Canada

Cited by 48 publications

References 13 publications

Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies

Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies

Comparing cancer incidence, stage at diagnosis and outcomes of First Nations and all other Manitobans: a retrospective analysis

Barriers, supports, and effective interventions for uptake of human papillomavirus- and other vaccines within global and Canadian Indigenous peoples: a systematic review protocol

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