Linked Health Data Research Articles

Using Linked Health Data to Create a Population-based Cohort of Adults With Congenital Heart Disease

Using Linked Health Data to Create a Population-based Cohort of Adults With Congenital Heart Disease

The health impact of Scotland's Baby Box Scheme: a natural experiment evaluation using national linked health data

Scotland's Baby Box Scheme (SBBS) is a national programme offering a box of essential items to all pregnant women in Scotland intended to improve infant and maternal health. We aimed to evaluate the effect of SBBS on selected infant and maternal health outcomes at population and subgroup levels (maternal age and area deprivation). Our complete-case, intention-to-treat evaluation used national health data (from the Scottish Morbidity Record [SMR] 01, SMR02, and the Child Health Surveillance Programme-Pre School), linking birth records to postnatal hospitalisation and universal health visitor records in Scotland. We considered maternal-infant pairs of all live-singleton births 2 years either side of SBBS introduction (Aug 17, 2015, to Aug 11, 2019). We estimated step-changes and trend-changes in outcomes (hospital admission and self-reported exclusive breastfeeding, tobacco smoke exposure, and infant sleeping position) by week of birth using segmented Poisson regression, adjusting for over-dispersion and seasonality where necessary. The analysis comprised 182 122 maternal-infant pairs. The prevalence of tobacco smoke exposure reduced after SBBS introduction: step decrease of 10% (prevalence ratio 0·904 [95% CI 0·865-0·946]; absolute decrease of 1·6% 1 month post-introduction) for infants and 9% (0·905 [0·862-0·950]; absolute decrease of 1·9% 1 month post-introduction) for the primary carer. There was no evidence of changes in infant and maternal all-cause hospital admissions or infant sleeping position. Among mothers younger than 25 years, there was a 10% step-increase in breastfeeding prevalence (1·095 [1·004-1·195]; absolute increase of 2·2% 1 month post-introduction) at 10 days and 17% (1·174 [1·037-1·328]) at 6-8 weeks postnatal. Although associations were robust to most sensitivity analyses, for smoke exposure associations were only observed early in the postnatal period. SBBS reduced infant and primary carer tobacco smoke exposure, and increased breastfeeding among young mothers in Scotland. However, absolute effects were small. Medical Research Council, Scottish Government Chief Scientist Office, and National Records of Scotland.

Cancer development in patients hospitalized with systemic lupus erythematosus: A population-level data linkage study.

To explore the association between systemic lupus erythematosus (SLE) with the risk of cancer development and subsequent 5-year mortality in Western Australia (WA). Population-level, data linkage study of SLE patients (n = 2111) and general population comparators (n = 21 110) hospitalized between 1980 and 2014. SLE patients (identified by ICD-9-CM: 695.4, 710.0, and ICD-10-AM: L93.0, M32.0) were nearest matched (10:1) for age, sex, Aboriginality, and temporality. Follow up was from time zero (index SLE hospitalization) to cancer development, death or 31 December 2014. We assessed the risk of cancer development and subsequent 5-year mortality between SLE patients and comparators with univariate and multivariate-adjusted Cox proportional hazards regression models. SLE patients had similar multivariate-adjusted risk (adjusted hazard ratio [aHR] 1.03, 95% confidence interval [CI] 0.93-1.15; p = .583) of cancer development. Cancer development risk was higher in SLE patients <40 years old (aHR 1.58, 95% CI 1.29-1.94; p < .001), and from 1980 to 1999 (aHR 1.16, 95% CI 1.02-1.31; p < .001). SLE patients had higher risk of developing cancer of the oropharynx (aHR 2.13, 95% CI 1.30-3.50), vulvo-vagina (aHR 3.22, 95% CI 1.34-7.75), skin (aHR 1.20, 95% CI 1.01-1.43), musculoskeletal tissues (aHR 2.26, 95% CI 1.16-4.40), and hematological tissues (aHR 1.78 95% CI 1.25-2.53), all p < .05. After cancer development, SLE patients had increased risk of 5-year mortality (aHR 1.31, 95% CI 1.06-1.61); highest in patients <50 years old (aHR 2.03, 95% CI 1.03-4.00), and in those with reproductive system and skin cancers. Hospitalized SLE patients had increased risk of multiple cancer sub-types. Following cancer development, SLE patients had increased risk of 5-year mortality. There is scope to improve cancer prevention and surveillance in SLE patients. Not applicable. This low-risk risk study used de-identified administrative linked health data.

The impact of diabetes during pregnancy on neonatal outcomes among the Aboriginal population in Western Australia: a whole-population study.

Aboriginal and Torres Strait Islander (hereafter Aboriginal) women have a high prevalence of diabetes in pregnancy (DIP), which includes pre-gestational diabetes mellitus (PGDM) and gestational diabetes mellitus (GDM). We aimed to characterize the impact of DIP in babies born to Aboriginal mothers. A retrospective cohort study, using routinely collected linked health data that included all singleton births (N = 510 761) in Western Australia between 1998 and 2015. Stratified by Aboriginal status, generalized linear mixed models quantified the impact of DIP on neonatal outcomes, estimating relative risks (RRs) with 95% CIs. Ratio of RRs (RRRs) examined whether RRs differed between Aboriginal and non-Aboriginal populations. Exposure to DIP increased the risk of adverse outcomes to a greater extent in Aboriginal babies. PGDM heightened the risk of large for gestational age (LGA) (RR: 4.10, 95% CI: 3.56-4.72; RRR: 1.25, 95% CI: 1.09-1.43), macrosomia (RR: 2.03, 95% CI: 1.67-2.48; RRR: 1.39, 95% CI: 1.14-1.69), shoulder dystocia (RR: 4.51, 95% CI: 3.14-6.49; RRR: 2.19, 95% CI: 1.44-3.33) and major congenital anomalies (RR: 2.14, 95% CI: 1.68-2.74; RRR: 1.62, 95% CI: 1.24-2.10). GDM increased the risk of LGA (RR: 2.63, 95% CI: 2.36-2.94; RRR: 2.00, 95% CI: 1.80-2.22), macrosomia (RR: 1.95, 95% CI: 1.72-2.21; RRR: 2.27, 95% CI: 2.01-2.56) and shoulder dystocia (RR: 2.78, 95% CI: 2.12-3.63; RRR: 2.11, 95% CI: 1.61-2.77). Birthweight mediated about half of the DIP effect on shoulder dystocia only in the Aboriginal babies. DIP differentially increased the risks of fetal overgrowth, shoulder dystocia and congenital anomalies in Aboriginal babies. Improving care for Aboriginal women with diabetes and further research on preventing shoulder dystocia among these women can reduce the disparities.

Cohort profile: rationale and methods of UK Biobank repeat imaging study eye measures to study dementia

PurposeThe retina provides biomarkers of neuronal and vascular health that offer promising insights into cognitive ageing, mild cognitive impairment and dementia. This article described the rationale and methodology of eye...

Acute myocardial infarctions identified in the Manitoba Occupational Disease Surveillance System: A linkage of worker's compensation and provincial health data.

The purpose of this study was to identify jobs and industries that may be associated with increased or decreased risk of myocardial infarction. We linked provincial health care data with Workers Compensation Board (WCB) of Manitoba claims data to create the Manitoba Occupational Disease Surveillance System (MODSS). Workers were eligible for inclusion in this study if their WCB claim listed an occupation, their claim could be linked to health data, they had an accepted non-acute myocardial infarction (AMI) compensation time loss claim and were free of a recent (<1 year) AMI diagnosis at the start of disease follow-up. AMI cases were identified as the most-responsible diagnosis in the hospitalization file (ICD-9 410 or ICD-10 I20). Cases were included if they occurred after the WCB record injury date until end of coverage, either through moving out of province, reaching age 65, death, or the end of the study period (March 1, 2020). We identified 1880 incident AMIs amongst 150,022 claims recorded in the MODSS (1.25%). A number of industries and occupations were found to have higher and lower AMI rates. Care providers and educational, legal, and public protection support occupations had a lower hazard ratio (HR; 0.64; 95% confidence interval [CI]: 0.44-0.92) compared to the overall cohort. Female chefs and cooks, and male butchers and bakers had elevated AMI HRs. Both male and female transport and heavy equipment operators and related maintenance occupations had increased HRs (1.48; 95% CI: 1.30-1.67). Often male and female workers employed in the same occupations had congruent AMI risks, but this was not always the case. The linkage of a WCB data set with provincial health claims data led to the identification of a number of occupations with elevated risks of AMI in Manitoba. This was most notable in the transportation industry. Identifying work areas with increased risk of AMIs could lead to targeted educational efforts and potential workplace modifications to lower this risk.

The influence of acculturation on the risk of preterm birth and low birthweight in migrant women residing in Western Australia.

The risk of preterm birth (PTB) and low birthweight (LBW) may change over time the longer that immigrants reside in their adopted countries. We aimed to study the influence of acculturation on the risk of these outcomes in Australia. A retrospective cohort study using linked health data for all non-Indigenous births from 2005-2013 in Western Australia was undertaken. Acculturation was assessed through age on arrival, length of residence, interpreter use and having an Australian-born partner. Adjusted odds ratios (aOR) for term-LBW and PTB (all, spontaneous, medically-indicated) were calculated using multivariable logistic regression in migrants from six ethnicities (white, Asian, Indian, African, Māori, and 'other') for different levels of acculturation, compared to the Australian-born population as the reference. The least acculturated migrant women, those from non-white non-Māori ethnic backgrounds who immigrated at age ≥18 years, had an overseas-born partner, lived in Australia for < 5 years and used a paid interpreter, had 58% (aOR 1.58, 95% CI 1.15-2.18) higher the risk of term-LBW and 40% (aOR 0.60, 95% CI 0.45-0.80) lower risk of spontaneous PTB compared to the Australian-born women. The most acculturated migrant women, those from non-white non-Māori ethnic backgrounds who immigrated at age <18 years, had an Australian-born partner, lived in Australia for > 10 years and did not use an interpreter, had similar risk of term-LBW but 43% (aOR 1.43, 95% CI 1.14-1.78) higher risk of spontaneous PTB than the Australian-born women. Acculturation is an important factor to consider when providing antenatal care to prevent PTB and LBW in migrants. Acculturation may reduce the risk of term-LBW but, conversely, may increase the risk of spontaneous PTB in migrant women residing in Western Australia. However, the effect may vary by ethnicity and warrants further investigation to fully understand the processes involved.

Attributable Perioperative Cost of Frailty after Major, Elective Noncardiac Surgery: A Population-based Cohort Study.

Patients with frailty consistently experience higher rates of perioperative morbidity and mortality; however, costs attributable to frailty remain poorly defined. This study sought to identify older patients with and without frailty using a validated, multidimensional frailty index and estimated the attributable costs in the year after major, elective noncardiac surgery. The authors conducted a retrospective population-based cohort study of all patients 66 yr or older having major, elective noncardiac surgery between April 1, 2012, and March 31, 2018, using linked health data obtained from an independent research institute (ICES) in Ontario, Canada. All data were collected using standard methods from the date of surgery to the end of 1-yr follow-up. The presence or absence of preoperative frailty was determined using a multidimensional frailty index. The primary outcome was total health system costs in the year after surgery using a validated patient-level costing method capturing direct and indirect costs. Secondary outcomes included costs to postoperative days 30 and 90 along with sensitivity analyses and evaluation of effect modifiers. Of 171,576 patients, 23,219 (13.5%) were identified with preoperative frailty. Unadjusted costs were higher among patients with frailty (ratio of means 1.79, 95% CI 1.76 to 1.83). After adjusting for confounders, an absolute cost increase of $11,828 Canadian dollar (ratio of means 1.53; 95% CI, 1.51 to 1.56) was attributable to frailty. This association was attenuated with additional control for comorbidities (ratio of means 1.24, 95% CI, 1.22 to 1.26). Among contributors to total costs, frailty was most strongly associated with increased postacute care costs. For patients with preoperative frailty having elective surgery, the authors estimate that attributable costs are increased 1.5-fold in the year after major, elective noncardiac surgery. These data inform resource allocation for patients with frailty.

Achievement of the ESC recommendations for secondary prevention of cardiovascular risk factors in high-risk patients with type 2 diabetes: A real-world national cohort analysis

AimTo assess compliance with European Society of Cardiology (ESC) secondary prevention recommendations in a nationwide contemporary population with diabetes mellitus (DM) and coronary artery disease. MethodWe conducted a retrospective observational study using linked health data in patients across Wales with DM undergoing percutaneous coronary intervention (2012–2017). The follow-up was for one year. We analysed the clinical characteristics, medications, target levels for HbA1c, low-density lipoprotein cholesterol (LDL-C), non-high-density lipoprotein cholesterol (non-HDL-C) and blood pressure against the ESC prevention guidelines. ResultsOverall, 3478 patients with diabetes had available data at 1-year post-PCI. Only 43% had HbA1c levels <53 mmol/L, but 81% had blood pressure < 140/80 (current ESC targets).Prescribing frequency of the newer hypoglycaemic agents (glucagon-like peptide-1 receptor agonists and sodium-glucose co-transporter 2 inhibitors) was suboptimal, with a higher rate in patients with HbA1c ≥53 mmol/mol.Only 51% & 27% of the patients had LDL-C levels <1.8 &1.4 mmol/L (2016 & 2019 guidelines recommendations respectively), and 55% & 34% had non-HDL-C levels <2.6 & 2.2 mmol/L (2016 & 2019 guidelines respectively). Of the uncontrolled LDL-C patients, 42% (2016 target) and 35% (2019 target) were prescribed high-intensity statins. Females were more likely to have LDL-C targets above the recommended level. ConclusionAchievement of ESC treatment goals in this very-high risk cohort for DM and hyperlipidaemia was far from optimal, with a low prescription rate of the guidelines-recommended therapy. Target goals for hypertension were met more frequently. An up-to-date analysis reflecting the current practice against the most recent guidelines is warranted.

The impact of cross-jurisdictional patient flows on ascertainment of hospitalisations and cardiac procedures for ST-segment-elevation myocardial infarction in an Australian population.

The patient journey for residents of New South Wales (NSW) Australia with ST-elevation myocardial infarction (STEMI) often involves transfer between hospitals and these can include stays in hospitals in other jurisdictions. To estimate the change in enumeration of STEMI hospitalisations and time to subsequent cardiac procedures for NSW residents using cross-jurisdictional linkage of administrative health data. Records for NSW residents aged 20 years and over admitted to hospitals in NSW and four adjacent jurisdictions (Australian Capital Territory, Queensland, South Australia, and Victoria) between 1 July 2013 and 30 June 2018 with a principal diagnosis of STEMI were linked with records of the Australian Government Medicare Benefits Schedule (MBS). The number of STEMI hospitalisations, and rates of angiography, percutaneous coronary intervention and coronary artery bypass graft were compared for residents of different local health districts within NSW with and without inclusion of cross-jurisdictional data. Inclusion of cross-jurisdictional hospital and MBS data increased the enumeration of STEMI hospitalisations for NSW residents by 8% (from 15,420 to 16,659) and procedure rates from 85.6% to 88.2%. For NSW residents who lived adjacent to a jurisdictional border, hospitalisation counts increased by up to 210% and procedure rates by up to 70 percentage points. Cross-jurisdictional linked hospital data is essential to understand patient journeys of NSW residents who live in border areas and to evaluate adherence to treatment guidelines for STEMI. MBS data are useful where hospital data are not available and for procedures that may be conducted in out-patient settings.

Charting a Course for Smartphones and Wearables to Transform Population Health Research.

The use of data from smartphones and wearable devices has huge potential for population health research, given the high level of device ownership; the range of novel health-relevant data types available from consumer devices; and the frequency and duration with which data are, or could be, collected. Yet, the uptake and success of large-scale mobile health research in the last decade have not met this intensely promoted opportunity. We make the argument that digital person-generated health data are required and necessary to answer many top priority research questions, using illustrative examples taken from the James Lind Alliance Priority Setting Partnerships. We then summarize the findings from 2 UK initiatives that considered the challenges and possible solutions for what needs to be done and how such solutions can be implemented to realize the future opportunities of digital person-generated health data for clinically important population health research. Examples of important areas that must be addressed to advance the field include digital inequality and possible selection bias; easy access for researchers to the appropriate data collection tools, including how best to harmonize data items; analysis methodologies for time series data; patient and public involvement and engagement methods for optimizing recruitment, retention, and public trust; and methods for providing research participants with greater control over their data. There is also a major opportunity, provided through the linkage of digital person-generated health data to routinely collected data, to support novel population health research, bringing together clinician-reported and patient-reported measures. We recognize that well-conducted studies need a wide range of diverse challenges to be skillfully addressed in unison (eg, challenges regarding epidemiology, data science and biostatistics, psychometrics, behavioral and social science, software engineering, user interface design, information governance, data management, and patient and public involvement and engagement). Consequently, progress would be accelerated by the establishment of a new interdisciplinary community where all relevant and necessary skills are brought together to allow for excellence throughout the life cycle of a research study. This will require a partnership of diverse people, methods, and technologies. If done right, the synergy of such a partnership has the potential to transform many millions of people's lives for the better.

1344 UNDERSTANDING PATHWAYS INTO CARE HOMES USING DATA (THE UNPICD STUDY)

Abstract Introduction Moving into a care home is a significant, life-changing experience which occurs to address care needs which cannot be supported elsewhere. UK health policy recommends against moving into a care home from the acute hospital. However, this occurs in practice. Better understanding pathways into care homes could improve support for individuals and families, service planning and policymaking. Our aim was to characterise individuals who move-in to a care home from hospital and those moving-in from the community, identifying factors associated with moving-in from hospital. Method A retrospective observational cohort study was conducted involving adults moving into care homes in Scotland between 1/3/13-31/3/16 using the Scottish Care Home Census (SCHC), a national individual-level social care dataset. SCHC data were linked to routine data sources including hospital admissions, community prescribing and mortality. The data were split into those moving-in from hospital and those moving-in from the community. Descriptive statistics characterising the two groups were generated and multivariate regression undertaken to identify factors associated with moving-in from hospital. Results A total of 23,892 individuals were included in the analysis, of whom 13,564 (56.8%) moved-in from hospital. A third came directly from an acute hospital, with 57.7% from rehabilitation or community hospitals and 7.1% from inpatient psychiatry. Being male, receiving nursing care, high frailty risk, increasing numbers of hospital admissions and diagnoses of any fracture or stroke in the six months before moving-into the care home were all significant predictors of moving-in from hospital. Conclusions The population moving-in to care homes from hospital are clinical distinct from those moving-in from the community. National cross-sectoral data linkage of health and social care data is feasible, but the available data are dominated by health characteristics. There is an urgent need to operationalise other meaningful variables which shape care pathways to enhance understanding and evidence.

Understanding men's beliefs and concerns about linking health data in the context of precision medicine.

Linking data is a critical feature of precision medicine initiatives that involves integrating information from multiple sources to improve researchers' and clinicians' ability to deliver care. We have limited understanding of how individuals perceive linking data as it relates to precision medicine. The aim of this study was to identify how sociodemographics, comorbidities, and beliefs about precision medicine influence two outcomes related to linking data: beliefs about linking data and concerns about linking data among men. We recruited 124 adult men from primary care practices at a large clinical research university to complete a cross-sectional survey that included questions about sociodemographic characteristics, comorbidities, beliefs, benefits, and limitations of precision medicine, and two outcomes of interest: beliefs about the value of linking data and concerns about linking data. Descriptive statistics, bivariate associations, and multivariable regression were conducted. Participants had positive beliefs about linking data for precision medicine (M = 4.05/5) and average concern about linking data (M = 2.1/5). Final multivariable models revealed that higher levels of loneliness are associated with more positive beliefs about linking data (β = 0.41, p = 0.027). Races other than African American (β = -0.64, p = 0.009) and those with lower perceived limitations of precision medicine were less likely to be concerned about linking data (β = -0.75, p = 0.0006). Our results advance the literature about perceptions of linking data for use in clinical and research studies among men. Better understanding of factors associated with more positive perceptions of data linkages could help improve how researchers recruit and engage participants.

Understanding compensable and non-compensable patient profiles, pathways and physical outcomes for transport and work-related injuries in Queensland, Australia through data linkage

IntroductionIn many jurisdictions, people experiencing an injury often pursue compensation to support their treatment and recovery expenses. Healthcare costs form a significant portion of payments made by compensation schemes. Compensation...

Leafier Communities, Healthier Hearts: An Australian Cohort Study of 104,725 Adults Tracking Cardiovascular Events and Mortality Across 10 Years of Linked Health Data.

Green space reduces cardiovascular disease (CVD) risk, but few studies examine what types of green space matter, which is an important consideration as cities densify and apartments become more common. Participants were 86,727 in houses and 17,998 in apartments from the 45 and Up Study (Sax Institute) baseline survey with 10 years of linked hospitalisation and death data used to define: (i) all-cause; and (ii) CVD-mortality; (iii) fatal and non-fatal CVD events; and (iv) acute myocardial infarction (AMI). Associations with total green space, tree canopy cover and open grass within 1.6 km buffers were assessed using survival analysis adjusted for potential confounders. Mean percentage green space indicators were all higher among participants in houses than in apartments. Among residents of houses, a 10% increase in total green space was associated with reduced risk of CVD mortality (HR 0.97, 95%CI 0.95-1.00). A 10% increase in tree canopy cover was associated with reduced risks of all-cause mortality (HR 0.97, 95%CI 0.95-0.99), CVD mortality (HR 0.96, 95%CI 0.93-0.98), and fatal or non-fatal AMI (HR 0.93, 95%CI 0.89-0.96). In contrast, a 10% increase in open grass was associated with an increased risk of fatal or non-fatal AMI (HR 1.15, 95%CI 1.09-1.20) in residents of houses. Among residents of apartments, a 10% increase in total green space was associated with increased risk of all-cause mortality (HR 1.04, 95%CI 1.00-1.08) and CVD mortality (HR 1.03, 95%CI 1.00-1.08). Urban reforestation may be a population-level intervention to protect cardiovascular health, especially for people living in houses. The intersection of urban greening and cardiovascular health among residents of apartments warrants further investigation.

Abstract 14602: Does Cancer Treatment Break Your Heart? A Linked Health Data Analysis of Thecharacteristics and Survival of Patients Who Have Developed Cardiovascular Disease Post Cancer Treatment

Background: Cancer treatment induced cardiotoxicity, can be a devastating outcome of cancer therapy. It is possible that a patient can survive cancer but develop cardiovascular disease (CVD). Aim: to determine whether there are differences in the characteristics of cancer patients who received potentially cardiotoxic cancer therapy and subsequently developed CVD and those who did not. Methods: This epidemiological study will comprise a retrospective analysis of de-identified linked health data sets, including the Integrated Activity Collection (ISAAC) of Hospital Separations, South Australian Cancer Registry (SACR), Northern Territory Cancer Registry (NTCR) and mortality (Births Deaths and Marriage Registry Data) and NT Hospital Separation data. The total population will be segregated in two distinct groups namely ‘Cancer with no HF’ and ‘Cancer with HF’ to compare the between group differences by demographic factors and medical history. Results: Of the (n=17,389) patients who received chemotherapy cancer treatment between July 2001-June 2017, 49% (8,530) were diagnosed with HF post cancer treatment( median age at cancer diagnosis 65 years; 58% male); crude mortality was 73% within the HF and cancer group; cause of death within this group was HF related 14%; cancer related 63%; other 22% compared to the non HF and cancer group ( median age at cancer diagnosis 58 years; 53% male) who had a mortality rate of 46%; 6.2% CVD related; 68.8% cancer related and 25% other. Conclusion: After adjusting for age, sex, tumour grade, cancer site and CVD admissions prior to cancer diagnosis patients with CVD and cancer had poorer outcomes.

Gender inequality in source country modifies sex differences in stroke incidence in Canadian immigrants

Research suggests that gender inequality, measured using the gender inequality index (GII), influences stroke mortality in women compared to men. We examine how source country GII modifies the rate of ischemic stroke in women compared to men after immigration to Canada, a country with low gender inequality. We used linked health data and immigration records of 452,089, stroke-free immigrants aged 40–69 year who migrated from 123 countries. Over 15 years of follow-up, 5991 (1.3%) had an incident ischemic stroke. We demonstrate (a) a lower adjusted rate of stroke in women compared to men (hazard ratio 0.64; 95% CI 0.61–0.67); (b) that sex differences in stroke incidence were modified by source country GII, as the hazard of stroke in women vs. men attenuated by a factor of 1.06 for every 0.1 increase in the GII of the source country (Psex*GII = 0.002); and (c) migration to a country with low GII attenuates the adverse effect of source country GII on sex differences in stroke incidence. Evaluating pathways through which source country gender inequality differentially influences stroke risk in immigrant women compared to men could help develop strategies to mitigate the effects of early-life gender inequality on stroke risk.

Views of parents, adults born preterm and professionals on linkage of real-world data of preterm babies

ObjectiveTo explore views of parents of preterm babies, adults born preterm and professionals, on the linkage of real-world health and education data for research on improving future outcomes of babies...

AcceSS and Equity in Transplantation (ASSET) New Zealand: Protocol for population-wide data linkage platform to investigate equity in access to kidney failure health services in New Zealand.

BackgroundKidney transplantation is considered the ideal treatment for most people with kidney failure, conferring both survival and quality of life advantages, and is more cost effective than dialysis. Yet, current health systems may serve some people better than others, creating inequities in access to kidney failure treatments and health outcomes. AcceSS and Equity in Transplantation (ASSET) investigators aim to create a linked data platform to facilitate research enquiry into equity of health service delivery for people with kidney failure in New Zealand.MethodsThe New Zealand Ministry of Health will use patients’ National Health Index (NHI) numbers to deterministically link individual records held in existing registry and administrative health databases in New Zealand to create the data platform. The initial data linkage will include a study population of incident patients captured in the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA), New Zealand Blood Service Database and the Australia and New Zealand Living Kidney Donor Registry (ANZLKD) from 2006 to 2019 and their linked health data. Health data sources will include National Non-Admitted Patient Collection Data, National Minimum Dataset, Cancer Registry, Programme for the Integration of Mental Health Data (PRIMHD), Pharmaceutical Claims Database and Mortality Collection Database. Initial exemplar studies include 1) kidney waitlist dynamics and pathway to transplantation; 2) impact of mental illness on accessing kidney waitlist and transplantation; 3) health service use of living donors following donation.ConclusionThe AcceSS and Equity in Transplantation (ASSET) linked data platform will provide opportunity for population-based health services research to examine equity in health care delivery and health outcomes in New Zealand. It also offers potential to inform future service planning by identifying where improvements can be made in the current health system to promote equity in access to health services for those in New Zealand.

A population-based approach to assessing diabetes management during COVID-19: insights from population data in Ontario, Canada.

ObjectiveDiabetes management requires ongoing monitoring of diabetes care from primary care, specialist care and laboratory testing. COVID-19 led to changes in access to in-person care. The purpose of this research was to assess changes in the management of diabetes during the COVID-19 pandemic using population-linked datasets and population segmentation.&#x0D; ApproachWe identified over 1.4 Million Ontarians with diabetes (approximately 10% of the population) with valid health insurance as of April 1, 2019 and April 1, 2020. We measured 11 indicators of diabetes management including laboratory testing for HbA1c and LDL (highlighted in this abstract). With screening indicators, we examined changes in the proportion of the population up-to-date with screening at the end of each fiscal year (March 31, 2020 and March 31, 2021) overall and according to population segments created using linked health data from primary care, home care, long term care and hospitals.&#x0D; ResultsOverall screening rates that required laboratory testing for HbA1c and LDL fell substantially from 54% to 40% and 68% to 59% overall. Comparing across population segments, residents in Long Term Care facilities had the smallest changes in screening rates; individuals with low, medium and high complexity chronic conditions and end-of-life conditions had the largest changes; maternity, cancer, mental health and frail populations were in the middle. Differences according the primary care enrolment models (capitation vs fee-for-service) were relatively minor but patients who were not rostered to a primary care physician had the largest reductions in laboratory screening. Results for all 11 indicators will be shared in the presentation.&#x0D; ConclusionCOVID-19 was associated with substantial reductions in laboratory-based diabetes screening. Poor diabetes management is one of the strongest risk-factors for adverse outcomes in COVID-19. Rates of diabetes management declined most for at risk patient populations amplifying the need to differentially connect with patients to ensure ongoing care during the pandemic.