bluuebunny/crossref_metadata_2025_split huggingface dataset:
International Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research
Authors: Aitken Mhairi , Tully Mary , Porteous Carol , Cunningham-Burley Sarah 
Published: September 2018

IntroductionData-intensive health research is a fast moving field in which public involvement and engagement (PI\&E) is essential for developing socially acceptable and ethically robust processes and ensuring a social license for research practices. Nevertheless while some consensus is emerging around the importance of PI\&E, commitments and practices are varied.
Objectives and ApproachOur objective was to identify a set of principles which would underpin international best practice in data-intensive health research.
A one-day consensus workshop was held in Manchester, U.K. in April 2017 and attended by 31 international participants from six countries, with a range of expertise relating to PI&E with data-intensive health research. Participants took part in facilitated discussions to identify key principles and a consensus statement was written to reflect the discussions at the workshop, this developed through iterative drafts on which all workshop participants as well as the four Farr Institute public panels were consulted.
ResultsThe consensus statement sets out key principles to establish a secure role for PI&E related to data-intensive health research internationally and to ensure best practice in its execution. While methods used may not vary greatly from PI&E with other types of research, or other policy areas, we have identified a number of particular features of data-intensive health research which make PI&E in this area worthy of special consideration. Often using data from multiple sources without explicit consent, PI&E in data-intensive health research is particularly important for raising awareness, for giving people a voice and for enabling people to participate in processes of research and governance. The consensus statement sets out the key principles to guide future best practice in PI&E with data-intensive health research.
Conclusion/ImplicationsThe emergence of data intensive health research and the importance of the social contract upon which it relies, demands that we move beyond rhetorical commitments and engage anew with clearly stated principles to build PI\&E into data-intensive health research at all levels.
Collaborative Public Health Surveillance Strategies to Address Local Health Needs
Authors: Padron Norma 
Published: September 2018

IntroductionThis presentation will review the current strategies being used by health care delivery systems across the US to incorporate via linkage, publicly available data assets. The discussion will focus on lessons learned with a specific emphasis of collaborations between health systems to address the opioid crisis.
Objectives and ApproachTo review ongoing strategies to incorporate local, publicly available data assets to clinical data assets that health systems have for purposes of collaborations with public health surveillance.
The emphasis of the discussion presented will be in the data strategies that local health departments and health care delivery systems have used to address the opioid crisis in the US.
This presentation will propose strategies to be explored and bring forth concerns about data fairness, accountability and transparency when collaborations for public health surveillance are in place.
ResultsThe presentation will discuss the experiences learned in specific regions in the United States. The main results will center around assessing the effectiveness of current strategies to share and analyze data across health care delivery systems and local agencies and government partners. The lessons learned of what works and what hasn't will be discussed in light of the ongoing epidemic of opioid use and drug overdose deaths in the United States. Finally the presentation will present strategies that could be explored for collaborative public health surveillance that address issues and concers of fairness, accountability and transparency.
Conclusion/ImplicationsThe implications of this report and presentation is that ongoing data linkage and sharing strategies have been -for the most part- insufficient to enable delivery systems and local public health departments and government address rising epidemiological concerns. The proposed strategies complement what is being done and advance data-driven public health
Multi-province epidemiological research using administrative data in Canada: Challenges and opportunities
Authors: Butler Amanda , Smith Mark , Jones Wayne , Adair Carol , Vigod Simone , Kurdyak Paul 
Published: September 2018

IntroductionCanada has a publicly-funded universal health care system with information systems managed by 13 provinces and territories. This context creates inconsistencies in data collection and challenges for epidemiological research conducted at the national or multi-jurisdictional level.
Objectives and ApproachUsing a recent five-province research project as a case study (BC, AB, MB, ON, QC), we will discuss the strengths and challenges of using Canadian administrative health data in a multi-jurisdictional context. Our goal is to contribute to a better understanding of these challenges and the development of a more integrated and harmonized approach to conducting multi-jurisdictional research.
ResultsMulti-jurisdictional data work is feasible but requires detailed coordination and extensive cooperation from all involved. There were noteable variations across provinces in this multi-province study. For example, time required to access the data varied greatly across the five provinces (from 4 to 9 months), and thus there were sequencing challenges, with some provinces being well into the analysis stage while others were still waiting for data. Access to human resources varied across provinces and in some cases led to delays in data abstraction. Cost of data (or analytic support) also varied across provinces, from $12,000 – $15,000. Critical to the success of the project was a coordinating group with expertise in both administrative health data and cross-provincial project coordination.
Conclusion/ImplicationsThis project demonstrated the value of comparable data infrastructure with equitable access policies. Many of the disadvantages to multi-province projects using health care administrative data, such as potential coding errors and inconsistencies, can be managed by developing national standards and protocols, and tools that are shared for data cleaning and validation.
Linking surveillance and administrative data to better understand dementia’s impact in Canada
Authors: Johnson Tracy , Husak Liudmila , Pelletier Catherine , Bartholomew Sharon 
Published: September 2018

IntroductionCanadian Institute of Health Information and Public Health Agency of Canada combined analytical work for a dementia report. The report linked surveillance and administrative data to support policy makers, health system planners and public in understanding the prevalence of seniors with dementia and their interactions with the health care system.
Objectives and ApproachDementia prevalence data from PHAC’s Canadian Chronic Disease Surveillance System was used as a denominator, and data from CIHI’s administrative databases was used as a numerator to calculate the statistics on interactions of seniors with dementia with the healthcare system.
Examples of the measures reported by database include:

Using DAD: Proportion of seniors with dementia who were hospitalized;
Using NACRS: Proportion of seniors with dementia who visited emergency departments;
Using CCRS: Proportion of seniors with dementia living in and outside of nursing homes;
Using HCRS: Proportion of seniors with dementia living in the community and receiving home care services.

ResultsResults for the measures above, as well as rates of patients receiving different services, statistics on where they live, their characteristics, quality of care by sectors, and impacts on caregivers will be presented.
One out of 5 seniors with dementia is admitted to hospital every year, and one out of four visited emergency departments at least once. Two out of five seniors with dementia reside in long term care. While in nursing homes, seniors with dementia experience more inappropriate antipsychotic and restraint use compared to seniors without dementia. They are especially susceptible to injury and falls. Once hospitalized, they tend to stay longer waiting for placement and experience greater hospital harm. Caregivers of seniors with dementia experience more distress compared to caregivers of other seniors.
Conclusion/ImplicationsThis work illustrates benefits of combining data from different organizations and sectors to help inform policy and fill data gaps. This innovative approach using PHAC’s surveillance and CIHI’s administrative data avoids confusion from varying estimates and duplication of work between organizations, generates new evidence, and reaches a broader audience.
Integrating population-wide laboratory testing data with physician audit-and-feedback reports to improve glycemic and cholesterol control among Ontarians with diabetes
Authors: Campitelli Michael , Paterson Michael , Azimaee Mahmoud , Greenberg Anna , Paprica P. Alison , Schull Michael , Victor J. Charles , Kumar Matthew , Shah Baiju , Tu Jack , Glazier Rick 
Published: September 2018

IntroductionImproving the care and management of patients with diabetes, particularly those with extreme blood glucose and/or cholesterol levels, has been identified as a key priority area for healthcare in Ontario. A multi-organizational collaboration produces audit-and-feedback reports distributed to consenting primary care physicians across the province for quality improvement purposes.
Objectives and ApproachWe examined the feasibility of linking the Ontario Laboratory Information System (OLIS), a large and nearly population-wide database of laboratory test results in Ontario, with the existing provincial audit-and-feedback reporting structure to integrate aggregated, physician-level measures of glycemic and cholesterol control among patients with diabetes.
All Ontario residents alive on March 31, 2014, attached to a primary care physician, and diagnosed with diabetes for at least two years were included. These patients were linked to OLIS to extract laboratory test orders and results for glycated hemoglobin (HbA1C) and low-density lipoproteins (LDL) between April 1, 2013 and March 31, 2014.
ResultsThere were 1,108,530 diabetes patients included who were assigned to 10,085 primary care physicians. During fiscal year (FY) 2013, 70%, 64%, and 59% of diabetes patients were tested for HbA1C, LDL, and both measures, respectively. Among the 648,238 diabetes patients with at least one of each test in FY2013, 13% had a HbA1C test exceeding a threshold of 9%, 4% had a LDL test exceeding a threshold of 4 mmol/L, and 0.8% exceeded both thresholds. At the physician-level, the median (Interquartile Range) proportions of diabetes patients exceeding the testing thresholds were 12% (9%-16%) for HbA1c and 4% (2%-6%) for LDL. In a multilevel logistic regression model, there was significant between-physician variability in the proportions of diabetes patients exceeding the HbA1C (p
Conclusion/ImplicationsWe developed a mechanism for integrating population-wide, clinical laboratory test results into physician audit-and-feedback reports to improve diabetes care in Ontario. Significant variation observed in the aggregated, physician-level proportions of diabetes patients testing above clinical thresholds for HbA1C and LDL highlights the importance of reporting such information to physicians.
Neighbourhood built environments as correlates of hospital burden and premature mortality in Canada
Authors: Mah Sarah M , Sanmartin Claudia , Riva Mylène , Dasgupta Kaberi , Ross Nancy 
Published: September 2018

IntroductionThe built environment can shape modifiable risk factors such as obesity, poor diet, and physical inactivity, and could be a policy lever for the reduction of chronic disease. In Canada, the health care costs related to chronic disease continue to rise and there have been few policy options offered.
Objectives and ApproachWe examine the role of the built environment in hospital burden and premature mortality, with an emphasis on one of the highest burden diseases, Type 2 Diabetes (T2D). Neighbourhood built environment measures for active living were derived using geographic information systems for respondents of the Canadian Community Health Survey, for whom we have linked hospitalization and mortality records. A combination of ICD codes, self-reported diabetes status, as well as a population-based algorithm identifying those at higher risk of developing diabetes were used to identify cases. Differences in hospitalization frequency, cumulative length of stay, and mortality are investigated.
ResultsOver half a million hospitalization records were identified in our cohort of roughly 450,000 survey respondents. Key factors such as age, gender, race, and socioeconomic status are accounted for in modelling the association between neighborhood environment and hospitalization. Hospital burden and mortality in T2D patients are much higher than that of patients who do not report having the condition, and those at elevated risk of T2D display intermediate levels of hospitalization. Two-part hurdle models show evidence of an association between more walkable neighborhoods and lower hospitalization risk in non-T2D patients as well as those at elevated risk of developing T2D. The relationship between neighborhoods and the volume of chronic-disease related episodes as well as mortality is unclear, and under further investigation.
Conclusion/ImplicationsElucidating the role of neighbourhood built environments on hospital burden and premature mortality for individuals with diabetes will provide insight as to the full range of clinical and non-clinical interventions that could feasibly address the needs of some the highest health care system users.
Premature Mortality among People with Severe Mental Illness – New Evidence from Linked Primary Care Data
Authors: Lee Sze Chim , John Ann , McGregor Joanna , Jones Ian , Walters James , Owen Michael , O‘Donovan Michael , Del Pozo Banos Marcos , Berridge Damon , Lloyd Keith 
Published: September 2018

IntroductionStudies assessing premature mortality in people with severe mental illness (SMI) are often based in one setting, hospital (secondary care inpatients and/or outpatients) or community (primary care). This may lead to ascertainment bias.
Objectives and ApproachThis study aimed to estimate standardised mortality ratios (SMRs) for all-cause and cause-specific mortality in people with SMI drawn from linked primary and secondary care populations compared to the general population. Standardised mortality ratios (SMRs) were calculated using the indirect method for a United Kingdom population of almost four million between 2004-2013.
ResultsThe all-cause SMR was higher in the cohort identified from secondary care hospital admissions (SMR: 2.9; 95% CI: 2.8-3.0) than from primary care (SMR: 2.2; 95% CI: 2.1-2.3) when compared to the general population. The SMR for the combined cohort was 2.6 (95% CI: 2.5-2.6). Solely hospital admission based studies may somewhat over-estimate premature mortality in those with SMI. However, there is no doubt this remains a major health inequality. Cause specific SMRs in the combined cohort were particularly elevated in those with SMI relative to the general population for ill-defined and unknown causes, suicide, and substance abuse, as well as a number of other causes.
Conclusion/ImplicationsThe ability to combine cohorts electronically from primary and secondary care is more representative of the whole population. Comprehensive characterisation of mortality is important to inform policy and practice and to discriminate settings to allow for proportionate interventions to address this health injustice.
First Nations Data Governance, Privacy, and the Importance of the OCAP® principles
Authors: Mecredy Graham , Sutherland Roseanne , Jones Carmen 
Published: September 2018

IntroductionGovernance of First Nations data and information requires important considerations that go beyond those typically used in research. Researchers are generally not trained in how to work appropriately within the realm of First Nations data. Further, while Canadian legislation protects individual privacy, First Nations’ community privacy is not protected.
Objectives and ApproachThe OCA® principles were created to fill these identified gaps. OCAP® is an acronym that outlines principles regarding the collection, use, and disclosure of data or information regarding First Nations. The letters in OCAP® describe four key principles: Ownership, Control, Access and Possession.
ResultsFirst Nations OCAP® principles are beginning to make a paradigm shift in research. This shift in applying OCAP® is changing the standard for First Nations’ data and information. These principles give First Nations sovereignty over their data and information when applied appropriately. The principles go beyond the protection of individual privacy to include the additional consideration of community privacy, a vital issue when working with First Nations’ data.
Conclusion/ImplicationsOCAP®, when effectively applied, is a bridging tool for both First Nation communities and researchers to engage in relevant, reciprocal, and practical research projects to tell a story, provide insight, and effect policy change.
Mortality of mothers with opioid-use during pregnancy: an international comparison using linked mother-baby records for England and Ontario
Authors: Guttmann Astrid , Blackburn Ruth , Amartey Abigail , Zhou Limei , Wijlaars Linda , Saunders Natasha , Harron Katie , Gilbert Ruth 
Published: September 2018

IntroductionOpioid-use during pregnancy is indicative of future adversity for mothers and children. We aimed to investigate neonatal abstinence syndrome (NAS) as a marker of drug-use in pregnancy and to compare maternal all-cause mortality relative to those with infants born without NAS in two high prevalence jurisdictions; England and Ontario.
Objectives and ApproachWe developed two parallel cohorts using linked mother-baby records for all births in hospitals in England and Ontario between 2002 and 2013. Mothers with opioid-use were identified based on NAS recorded in the baby’s record. Maternal mortality within 10 years of delivery was compared for mothers with and without a NAS-pregnancy. The association between opioid-use in pregnancy and all-cause mortality was modelled using Cox regression. In addition, we estimated the unadjusted cumulative incidence of cause-specific mortality within a competing risks framework. Harmonised clinical codes were used to define all exposures, outcomes and comorbidities.
ResultsThe study population comprised 13,581 and 4,966 NAS mothers in England and Ontario, respectively. Controls totalled 4,205,941 for England and 929,985 for Ontario. The crude hazard ratios for all-cause mortality were 12.1 (95% CI; 11.1-13.2) for England and 11.4 (9.7, 13.4) for Ontario, which were attenuated to 9.8 (9.0-10.6) and 9.0 (7.6, 10.7) respectively, after adjustment for maternal age at delivery and Charlson comorbidity index. The cumulative incidence of death was much higher among NAS mothers than controls for all causes except cancer in the English cohort, where estimates were similar. The majority of deaths within the NAS group were attributable to avoidable causes, particularly reflecting unintentional injuries (cumulative incidence of 19.6 (16.6-23.1) for England and 13.9 (9.7-19.3) for Ontario).
Conclusion/ImplicationsOur approach demonstrates the utility of mother-baby record linkage to examine long-term health outcomes of vulnerable families. We identified similarly high mortality rates among the mothers of NAS babies in both England and Ontario, indicating a need for public health programs to target support to mothers as well and infants.
Evidence from an Applied Research Health Question (AHRQ): Healthcare utilization of HIV patients before and after admission to Casey House, a specialized HIV hospital
Authors: Plumptre Lesley , Graves Erin , Ishiguro Lisa , Antoniou Tony , Stewart Ann , Carusone Soo Chan 
Published: September 2018

IntroductionThe Applied Health Research Question (AHRQ) portfolio is an initiative funded by the Ontario Ministry of Health and Long-Term Care, leveraging the linked data and the scientific expertise at ICES to answer questions from Knowledge Users that have a direct impact on healthcare policy, planning or practice.
Objectives and ApproachA request from Casey House, a specialty HIV hospital located in Toronto, ON, was reviewed and approved by the ICES AHRQ Team to evaluate patient healthcare utilization and costs. The purpose was to support the design of programs and services, improve transitions from healthcare settings to community services, and inform continuous quality improvement initiatives. Using inpatient records, hospital admissions to Casey House were identified in fiscal years 2009-2014. Inpatient, emergency, outpatient and home care visits were characterized before and after admission. Using the Ontario Drug Benefit Claims, antiretroviral (ARV) prescription fills were examined 7 days post discharge.
ResultsBetween April 1, 2009 and March 31, 2015, 268 HIV patients had one or more hospital admissions to Casey House. The majority of Casey House patients had an Aggregated Diagnosis Group (ADG) ≥ 10 (79%) or Resource Utilization Band (RUB) = 5 (78%), indicating a high co-morbidity burden. Rate of emergency department usage declined from 4.61 to 2.46 per person-year, before and after Casey House admission (p < 0.0001). Conversely, home care visits increased from 24.29 to 35.63 per person-year and family physician visits increased from 18.33 to 22.59 per person-year before and after Casey House admission (both p < 0.0001). Interestingly, 89% did not fill an ARV prescription within 7 days of Casey House discharge, however 76% followed up with an outpatient HIV visit within 30 days.
Conclusion/ImplicationsHealthcare utilization differed before and after admission to Casey House. Follow-up post-discharge warrants further examination to increase ARV prescription fills. Data from this AHRQ has facilitated future policy and programming changes. Results have been disseminated throughout the Toronto HIV research community to generate discussion on quality improvement in this population.