bluuebunny/crossref_metadata_2025_split huggingface dataset:
Study on construction of comprehensive community health databases through linkage between Community Health Survey data and other community contextual indicators in Korea
Authors: Kim Dong-Hyun 
Published: September 2018

IntroductionSince 2008, Korea Centers for Disease Control and Prevention have performed nationwide survey, Korea Community Health Survey(K-CHS) annually, to collect information on pervalences of smoking, drinking, physical activity, obesity, diet, oral health, and other health-related activities among randomly selected community-dwelling residents aged 19 years or over in ~250 administrative districts(Si-gun-gu).
Objectives and ApproachThis study aims to build comprehensive data library through leakage of area-based data collected from K-CHS and other community contextual health indicators from various government databases. For this purpose, we reviewed other databanks on community status health indicators comprehensively and tried to search linkage information from the related national public database.
ResultsWe reviewed the community health model, which is theoretically and empirically proven in other studies and tried to propose health determinants of community health through population health perspectives. We collected information on health outcomes of each community, measured by overall mortality and self-rated health. We also assessed health determinants, measured in five domains including social network, health behaviors, clinical care, social and economic factors, and physical environment. Childhood environment was dealt briefly. Geo-coded data on selected core indicators were collected for each domain and the validity, reliability, sensitivity, and robustness of these measures was evaluated. We constructed comprehensive databases through linkage of health outcomes and health determinants. We also suggested summary sheet template, comprizing comprehensive community health status indicators.
Conclusion/ImplicationsIn conclusion, we anticipate evidence-based community health intervention and evaluation of its performance through utilizing comprehensive databases on community health.
Linking Clinical and Administrative Data to Inform Performance Measures Regarding Access to Specialist Care for Patients with Rheumatoid Arthritis
Authors: Marshall Deborah A , Barber Claire , Zhang Sharon , Patel Jatin , Chen Guanmin , Faris Peter 
Published: September 2018

IntroductionRheumatoid arthritis (RA) is the most prevalent type of chronic adult inflammatory arthritis and requires timely diagnosis and subsequent access to specialist care and treatment from a rheumatologist. We developed a set of key performance indicators (KPIs) to evaluate access, effectiveness, acceptability, appropriateness and efficiency of care.
Objectives and ApproachThe overall objective was to measure performance of a central intake system for referral to rheumatology against the KPIs. We report on one accessibility KPIs: the percentage of patients with new onset RA with at least one visit to a rheumatologist in the first 365 days since diagnosis. We identified a cohort of RA patients using a validated case definition: >16 years, at least 1 RA related hospitalization (ICD-10-CA:M05.x-M06.x) or two RA related physician visits ≥ eight weeks apart within two years (ICD-9: 714.x). The incident case date was date of hospitalization or second physician visit (whichever came first).
ResultsThis KPI assessed the proportion of patients seen by a rheumatologist within one year of first RA visit by patients in the RA cohort. 13,914 cases of RA were diagnosed between April 1 2010 and March 31 2016. The percentage of patients with new onset RA with at least one visit to a rheumatologist in the first 365 days since diagnosis increased between fiscal years 2011 and 2015. Of the 2851 incident RA cases in fiscal year 2011, 1490 (53%) met the performance measure compared to 1710 of 2710 (63%) who met the definition in fiscal year 2015. Other KPIs, including wait times, are being evaluated using both clinical and administrative data.
Conclusion/ImplicationsBy linking multiple administrative datasets, we are able to measure system performance against a defined KPI and identify opportunities for system improvement. This is the first initiative in Alberta for patients with RA where data from different multi-custodial data repositories have been extracted, linked and analyzed for this purpose.
Factors associated with screen-detected breast cancer across five Canadian provinces: a CanIMPACT study
Authors: McBride Mary , Winget Marcy , Groome Patti , Decker Kathleen , Kendell Cynthia , Mahar Alyson , Grunfeld Eva 
Published: September 2018

IntroductionBreast cancer screening is intended to identify cancer in early stages when prognosis is better and treatments less invasive.
Objectives and ApproachWe describe Canadian inter- and intra-provincial variation in the percentage of screen-detected cases and identify factors related to having a screen-detected versus a non-screen detected breast cancer.
Breast cancers diagnosed from 2004/7 to 2010/11/12 in 5 Canadian provinces were included. Standard provincial datasets were created using screening program and claims data. A common algorithm (Alberta, Ontario) or variable from the screening dataset (British Columbia, Manitoba, Nova Scotia) was used to identify the mode of diagnosis (screening versus not). Relationship between screen-detected cancer and several demographic, clinical and healthcare utilization factors were explored.
ResultsThe percentage of screen-detected breast cancers varied from 25 to 40 percent across provinces; it ranged 43 to 51 percent for those aged 50-69. Within provinces, the percentage of screen-detected cancers varied across regional health authorities by a low of 1\% to a high of 33\%. Urban residence was positively associated with screen-detection in some provinces and negatively in others. Women in the lowest neighborhood income quintile had the smallest proportion of screen-detected cancers; the absolute difference from those in the highest quintiles ranged from 3.3-11.5\% across provinces. High continuity of care with a usual primary care provider was positively associated with having a screen-detected cancer compared to those with no usual care provider.
Conclusion/ImplicationsThe proportion of screen-detected breast cancers varied significantly across and within provinces suggesting geographic variability in access to screening services. Variation across provinces in terms of factors associated with screen-detected breast cancer also likely reflect access issues. The positive association of high continuity of care with screen-detection in all provinces suggests that regular care with a primary care physician is an important factor in improving screening rates and detection.
Principles and operational model for governing Diabetes Action Canada's data repository for patient-oriented research
Authors: Willison Donald , Trowbridge Joslyn , Sullivan Frank , Keshavjee Karim , Greiver Michelle 
Published: September 2018

Introduction Diabetes Action Canada is developing a data repository and registry of potential research participants to support research, QI, and service to improve diabetes care. Central to the repository are pseudonymised linkable electronic medical records (EMRs) from family practices that are participating in the Canadian Primary Care Sentinel Surveillance Network (CPCSSN).
Objectives and Approach We sought to develop an information governance process that would engender the trust of patients and the health care professionals (HCPs) that their EMR data were being managed responsibly in the best interests of patients living with diabetes. Following an extensive literature review, we developed a principles-based governance framework and operational model, with a strong focus on patient participation in the governance process. We recruited patients through our pre-existing patient advisory circles and physicians through our partners in CPCSSN. In January 2018, we held a training workshop for Research Governing Committee (RGC) members.
Results We identified eight values-based principles to guide our governance process: transparency; accountability; following the rule of law; integrity of purpose, science and ethics; participation and inclusiveness; impartiality and independence; effectiveness; efficiency and responsiveness; and reflexivity and continuous quality improvement of process. Patients represent 50% of RGC members and HCPs 20%. Patient members provide their perspectives on: goals and outcomes of the research; the benefits and burdens among people living with diabetes; and the communication preferences of patients around recruitment. HCPs provide a deep understanding of the settings and systems in which care is provided to ensure contextual integrity of the research. Two researchers and one person with bioethics expertise provide technical and ethics perspectives on data requests.
Conclusion/Implications Governance must go beyond legal compliance to ensure a ’social licence’ for the use of the data. In part, we address this through our guiding principles, our emphasis on patient and healthcare provider perspectives, and focus on research that is scientifically sound, ethically robust and in the public interest.
Self-harm hospitalised morbidity and mortality risk in Australia using a matched population-based cohort
Authors: Mitchell Rebecca , Cameron Cate 
Published: September 2018

IntroductionPrior and repeated self-harm hospitalisations are common risk factors for suicide. However, few studies have accounted for pre-existing comorbidities and prior hospital use when quantifying the burden of self-harm.
Objectives and ApproachTo quantify hospitalisation in the 12 months preceding and re-hospitalisation and mortality risk in the 12 months post a self-harm hospitalisation. A population-based matched cohort study of individuals ≥18 years using linked hospitalisation and mortality records from four Australian states. Self-harm was identified using a principal diagnosis of injury (S00-T75 or T79) and an external cause of self-harm (X60-X84). The index self-harm hospitalisation was identified and 12-month pre- and post-index injury health service use was examined. The non-injured comparison cohort was randomly selected from the electoral roll and was matched 1:1 on age, gender, and postcode of residence. Comorbidities were identified using diagnosis classifications with a 1-year lookback. Negative binomial regression was used to quantify associations between self-harm and counts of hospital admissions 12-months post the index hospitalisation using rate ratios and 95%CIs.
ResultsThere were 11,597 individuals with a self-harm hospitalisation in New South Wales, South Australia, Queensland or Tasmania with a matched comparison. Mean age was 38.6 years (SD=14.9) and 57.6% were female. The self-harm cohort had a higher proportion of Charlson comorbidities, mental health diagnoses, alcohol misuse and drug-related dependence than their matched counterparts. The self-harm cohort experienced a higher proportion of health service use in the 12-months preceding (20.5% vs 10.1%) and post (21.2% vs 10.6%) the index admission and a higher mortality rate (2.9% vs 0.3%) than their matched counterparts. The adjusted rate ratios (ARR) for hospital readmission were highest for females (ARR: 2.86; 95% CI: 2.33-3.52) and individuals aged 55-64 years (ARR: 3.96; 95%CI: 2.79-5.64).
Conclusion/ImplicationsImproved hospitalisation burden quantification for self-harm can inform resource allocation for intervention and after care services for individuals at-risk of repeated self-harm. Better assessment of at-risk self-harm behaviour, appropriate referrals and improved post-discharge care, focusing on care continuity is needed.
Linking cohort data with administrative health data to develop a new hypertension prediction model to aid precision health approach
Authors: Chowdhury Mohammad , Turin Tanvir , Leung Alex , O’Beirne Maeve , Sikdar Khokan , Quan Hude 
Published: September 2018

IntroductionHypertension is a common medical condition, affecting 1 in 5 Canadians, and is a major risk factor for heart attack, stroke, and kidney disease. Predicting the risk of developing incident hypertension may help to inform targeted preventive strategies.
Objectives and ApproachIdentification of major risk factors and incorporation into a multivariable model for risk stratification may help to identify individuals who are at highest risk for developing incident hypertension and would potentially benefit most from intervention. The goal of the proposed research is to develop a robust hypertension prediction model for the general population using the Alberta Tomorrow Project (ATP) cohort data linked with Alberta’s administrative health data. ATP is Alberta's largest population health cohort, contains baseline data on socio-demographic characteristic, personal and family history of disease, medication use, lifestyle and health behavior, environmental exposures, physical measures and bio samples.
ResultsAlberta’s administrative health data additionally provides information on health care utilization, enrollment, drugs, physician services, and hospital services. A prediction model for hypertension will be developed using logistic regression where information on candidate variables for the model will be gathered from ATP data and outcome (incident hypertension) will be ascertained from administrative health data (physicians/practitioner claim data and hospital discharge abstract data). Lacking follow-up information in current ATP data has laid the foundation of linking the two data sources through an anonymous unique person identifier (e.g. PHN) that will eventually provide follow-up information on ATP participants who are free of hypertension at baseline developed the disease as well as information on other potential variables.
Conclusion/ImplicationsThe proposed prediction model will help to identify individuals at highest risk for developing hypertension and those who may benefit most from targeted healthy behavioral interventions and/or treatment. Such identification of high risk people may help prevent hypertension as well as the continuing costly cycle of managing hypertension and its complications.
Qualifying information on the deaths and serious injuries caused by road traffic in five Brazilian capitals using record linkage
Authors: Mandacaru Polyana , Neto Otaliba Libânio Morais , Andradde Ana Lucia , Souza Marli , Aguiar Fernanda 
Published: September 2018

IntroductionRoad traffic crashes (RTCs) represent an public health problem, accounting for 1.2 million deaths per year. However, these figures may be even greater if health databases are linked to police records.
Objectives and ApproachMeasure the numbers of deaths and seriously injured victims and to estimate the percentage of corrections of the underlying cause of death, cause of hospitalization, and injury severity of the victims in five representative state capitals of the five macro-regions of Brazil. This was cross-sectional, study using the Hospital Information System, Mortality Information System and Police Road Traffic database. The RecLink III was used for the record linkage by identifying true pairs to calculate the correction percentage of the underlying cause of death, cause of hospitalization, and injury severity of the victims in the traffic records.
ResultsChange in the diagnosis of hospitalization in the Hospital Information System with percentage of correction of the cause at 24.4% for Belo Horizonte, 96.9% for Campo Grande, 100.0% for Palmas, and 33.2% for Teresina. The correction of the underlying cause of death in the Mortality Information System were 29.9%, 11.9%, 4.2%, and 33.5% for Belo Horizonte, Campo Grande, Curitiba, and Teresina, respectively. Change in the classification of injury severity was observed with an overall percentage of 100.0% for Belo Horizonte and Teresina, 48.0% for Campo Grande, and 51.4% for Palmas.
Conclusion/ImplicationsThe results showed the importance of the record linkage between health and police databases for the qualification of the RTCs and the victims in the five capital cities studied. This implies that deaths and serious injuries caused by RTCs are underestimated in the absence of integration of databases that record
Impact of linkage quality on inferences drawn from analyses using imperfectly matched data with high rates of linkage errors
Authors: Rentsch Christopher , Reniers Georges , Harron Katie , Machemba Richard , Mtenga Baltazar , Michael Denna , Kabudula Chodziwadziwa , Natalis Redempta , Urassa Mark , Todd Jim , Zaba Basia 
Published: September 2018

IntroductionStudies based on high-quality linked data in developed countries show that residual linkage errors impact the bias and precision of subsequent analyses. Since 2015, we conducted point-of-contact interactive record linkage (PIRL) between serological survey data and manually digitised medical records with low data quality from three clinics in rural Tanzania.
Objectives and ApproachWe sought to determine the impact of the substantial linkage errors made by automated probabilistic linkage (a commonly used, less accurate, but much cheaper alternative to PIRL) on the bias and precision of inferences drawn from Cox regression analyses, comparing time from a positive HIV diagnostic test to registration at a local HIV care and treatment clinic (CTC) by testing modality (sero-survey vs. clinic). Using PIRL links as the gold standard, we quantified false/missed matches, compared characteristics between linked and unlinked data, and evaluated regression estimates at low, medium, and high (25th, 50th, and 75th percentile) match score thresholds.
ResultsBetween 2015-2017, 297 and 147 individuals with gold standard links received HIV+ test results in sero-surveys and clinics, respectively. Automated probabilistic linkage correctly identified 276 individuals (positive predictive value [PPV]=62%) at the low threshold and 43 individuals (PPV=96%) at the high threshold. At the lowest threshold, false matches were more likely to be clinic testers and less likely to register at CTC. These differences attenuated with increased threshold. Testing modality was significantly associated with time to CTC registration in the gold standard data (adjusted hazard ratio [HR] 6.42, 95%CI 4.45-9.28). Increasing false matches progressively weakened the association (low threshold: HR 4.99, 95%CI 3.45-7.21). Increases in missed matches were strongly correlated with a reduction in the precision of coefficient estimates (R-squared=0.94; p=0.0001).
Conclusion/ImplicationsWhile the significance of inferences did not change, a clear direction of bias was identified. High rates of false matches in this setting reduced the magnitude of the association; missed matches reduced precision. Adjusting for these biases could provide more robust results using data with considerable linkage errors.
Avoidable mortality among parents whose children were placed in care in Sweden: A retrospective matched cohort study
Authors: Wall-Wieler Elizabeth , Vinnerljung Bo , Liu Can , Roos Leslie , Hjern Anders 
Published: September 2018

IntroductionSeparation from one’s child can have significant consequences for parental health and well-being.
Objectives and ApproachWe aimed to investigate whether parents whose children were placed in care had higher rates of avoidable (amenable and preventable) mortality. Data were obtained from the Swedish national registers. Mortality rates among parents whose children were placed in care between 1990 and 2012 (17 505 mothers, 18 286 fathers) were compared with a 5:1 matched cohort of parents whose children were not placed. We computed rate differences and hazard ratios of all-cause and avoidable mortality.
ResultsWhen compared with parents who did not have a child placed in care, there were an additional 21 avoidable deaths per 10 000-person years among mothers and an additional 27 avoidable deaths per 10 000-person years among fathers whose children were placed in care. Among mothers, death due to preventable causes were 3·83 times greater (95% CI 2·82-5·21) and deaths due to amenable causes were 3·12 times greater (95% CI 2·07-4·69) for those whose children were placed in care. Among fathers, death due to preventable causes was 1·75 times greater (95% CI 1·41-2·16) and deaths due to amenable causes were 1·52 times greater (95% CI 1·08- 2·13) for those whose children were placed in care. Avoidable mortality rates were higher among mothers whose children were young when placed in care and parents whose children were all placed in care.
Conclusion/ImplicationsMothers who had a young child placed and parents whose children were all placed in care are at much higher risk of avoidable mortality than parents whose children were not placed in care. Targeted public health interventions and more attentive health care could reduce risk of avoidable mortality in this group of parents.
Towards an ethically-founded framework for the use of mobile phone CDRs in health research
Authors: Jones Kerina , Daniels Helen , Heys Sharon , Ford David 
Published: September 2018

IntroductionCall Detail Records (CDRs) are collected by mobile network operators in the course of service provision, and they are increasingly being used in health research. It has been identified that further work is needed to show that CDRs can be used within an ethically-founded framework that meets with social acceptability.
Objectives and ApproachThe published research literature was reviewed to identify data governance arrangements, challenges and potential opportunities for the greater use of the location element of CDRs in health research. A series of 3 workshops with members of the public (N=61) were conducted to gain views on the use of CDRs for health research. Data use scenarios of CDRs for health research were constructed to consider risk and mitigating controls. The findings were drawn together against a backdrop of legislative and regulatory requirements.
ResultsThe majority of published studies focused on low and middle income countries, often modelling the transmission of infectious diseases, and population movement following natural disasters. CDRs were used in anonymised or aggregated form, and gaining regulatory approvals varied with data provider and by jurisdiction. Only 2 people knew CDR data was being used for health research, but ultimately, most (N=49) were happy for their anonymised CDRs to be used, provided that safeguards were in place. Recommendations towards an ethically-founded framework for using CDR locations in health research are proposed, including the need for greater transparency, accountability, and the incorporation of public views for social acceptability.
Conclusion/ImplicationsDespite limitations inherent in the data, mobile phone CDRs have been used successfully in health research. People are generally amenable to the use of anonymised CDR data, but they want to be properly informed. The proposed recommendations should be taken into consideration to contribute towards a consistent, socially-acceptable, ethically founded framework.