bluuebunny/crossref_metadata_2025_split huggingface dataset:
Pandemic effects on health condition specific healthcare encounters in British Columbia, Canada.
Authors: Flindall Jason , Dhannewar Saiganesh , Skrigitil Mikhail , Chadda Siddharth , Magnus Samantha , Richards Heather , Corscadden Lisa 
Published: August 2022

ObjectiveWhile overall health service use declined following the start of the pandemic, the aim of this analysis is to generate insights to inform public health priorities by identifying higher-than-expected patterns of health care service use for some health condition and population groups.
ApproachHealth care encounters for hospital, emergency department, and primary care encounters between 2011 and 2021 were categorized into condition groups according to the CIHI Population Grouping Methodology (British Columbia version). Actual health condition encounters were compared with ARIMA-based encounter forecasts to identify conditions with different-from-expected encounter rates in 2020 and 2021. For each of 225 CIHI-defined health conditions, we identified health conditions for which service use was higher-than-expected. Area-based socioeconomic status and virtual care visit data are examined to further explore conditions that continue to differ from their pre-pandemic encounter patterns.
ResultsThis analysis demonstrates that some health condition groups have seen dramatic increases in service use. The three most impacted groups with higher-than-expected encounters are hypercholesterolaemia/high cholesterol [47.8% increase in average monthly encounters since 2019], emotional and behavioural disorder (w/onset generally in childhood) [+37.3%] and neurotic/anxiety/obsessive compulsive disorder [+28.0%]. Since the start of the pandemic in British Columbia, the health condition groups with both the highest volumes of services and higher than expected service use included: hypercholesterolemia & hypothyroidism, mental health conditions (eating disorder, depression, and others), hypertension and heart failure, and diabetes. Additional descriptive analysis explores potential inequities in encounters by socio-economic status and how virtual care has changed service patterns.
ConclusionIncreased service use may reflect greater need, better access to virtual care or potential changes in diagnoses. Identifying patterns of higher-than-expected use can support program planning to address growing need in certain regions or populations. Additional exploration will be undertaken to examine lower-than-expected service use as potential unmet need.
Evaluation of the reported data linkage process and associated quality issues for linked routinely collected healthcare data in Multimorbidity research: a systematic review.
Authors: Elstad Maria , Douiri Abdel , Røislien Jo 
Published: August 2022

ObjectivesThe objective for this systematic review was to examine how the record linkage process was reported and to understand challenges related to accessing, linking, and analysing linked routinely collected data used for multimorbidity research.
ApproachA systematic search for relevant studies was conducted in three online databases (Medline, Web of Science and Embase) in May 2021 using predefined search terms, and inclusion and exclusion criteria. Studies using linked routinely collected data for multimorbidity research were included. Information was extracted on how the linkage process was reported, which conditions were studied together, which data sources were used, as well as challenges encountered during the linkage process or with the linked dataset.
The findings from this study will feed into further guidance to understand and minimise bias due to linkage error in medical research.
ResultsTwenty studies were included, of which seventeen looked at the relationship between two specified long-term conditions. Fourteen studies received the linked dataset from an external data linkage provider. Hospital Episode Statistics was the most common source of data (n=5). Eight studies reported variables used for the data linkage, while only two studies reported pre-linkage checks. The quality of the linkage was assessed by three studies, of which two reported linkage rate and one reported raw linkage figures. Only one study checked for bias by comparing patient characteristics of linked and non-linked records.
ConclusionsThe linkage process was poorly reported in multimorbidity research, even though this might introduce bias and potentially lead to inaccurate inferences drawn from the results. There is therefore a need for increased awareness of linkage bias and transparency of the linkage processes, which could be achieved through better adherence to reporting guidelines.
Creating a new mental health e-cohort using the SHARE research register: Linking questionnaire, genetic and routine health data.
Authors: Iveson Matthew , Adams Mark , McIntosh Andrew 
Published: August 2022

ObjectivesAdvancements in mental health research depend upon continuing development of the data landscape, including the creation of population cohorts that combine different types of data from a variety of sources. The present project aimed to produce a new, multi-faceted mental health e-cohort to benefit further research.
ApproachTaking advantage of a standing research resource – the SHARE Scotland research register (N ~ 285,000) – we administered an online survey of mental health, treatment use and wellbeing. Over 10,000 individuals (Mean age = 57.16 years; 63% female) took part in the survey; all participants consented to secure linkage of their routinely-collected health records with questionnaire data and over 90% also consented to the research use of genetic data gained from diverted blood samples. We linked questionnaire responses with routinely-collected health data and genetic data within a Trusted Research Environment to create a large cohort enhanced for mental health research.
ResultsIn this presentation we describe the cohort, summarise responses to the mental health questionnaire and give some example research uses of the linked data. Focussing on depression, we contrast the prevalence of self-reported diagnoses of depression (27% of the sample) with diagnostic codes from routinely-collected hospital admission and national prescribing data and examine predictors of each.
ConclusionsCombining mental health questionnaire data, longitudinal health records, and genetic data creates new opportunities for mental health research and allows researchers to compare the utility of each data source. By making this new e-cohort available to other researchers we hope to drive advancements in mental health research.
Are children who do not receive their first Measles Mumps and Rubella (MMR1) vaccination by 24 months more likely to share a household with older non-vaccinated children? Linked household-level analysis of primary care electronic health records (EHRs).
Authors: Marszalek Milena , Firman Nicola , Wilk Marta , Homer Kate , Harper Gill , Dezateux Carol 
Published: August 2022

ObjectivesOnly 89.4% of UK children receive MMR1 by age 24 months. We investigated whether children not receiving MMR1 by this age were more likely to share a household with children also not vaccinated by this age, and its variation by sex, ethnic background and area-level deprivation.
ApproachWe identified 208,907 children born between 2013-2019 and eligible for MMR1 from the primary care EHRs of 1,192,630 children registered to a general practitioner in North East London between 2001-2021. We estimated the proportion of children and 95% Confidence Interval (CI) receiving MMR1 between 12 and 24 months of age. We calculated prevalence ratios (PR) by sex, ethnicity, and deprivation (Index of Multiple Deprivation (IMD) quintiles). We identified all children with the same pseudonymised Unique Property Reference Numbers (pUPRNs) at the MMR1 date. We are completing analyses to calculate mutually adjusted PRs and examine household-level associations in timeliness of MMR1.
ResultsOverall, 172,319 (82.5%) of 208,907 eligible children received an MMR1 between age 12-24 months. Non-receipt of MMR1 by 24 months was less likely in children from South Asian ethnic backgrounds (PR 0.74; 95% CI: 0.68,0.79), and more likely in those from Black ethnic backgrounds (1.43;1.31,1.56) and in those living in the most deprived IMD quintile (1.83;1.49,2.23). We identified 137,919 children with the same pUPRNs at the MMR1 date, comprising 69,892 boys (50.7%) and 41,846 (30.3%), 32,631 (23.7%), 10,793 (7.8%), 12,246 (8.9%) and 40,403 (29.3) from White, South Asian, Black, Mixed/Other and Missing ethnic backgrounds respectively. We are calculating adjusted PRs and will estimate associations between non-receipt of MMR1 in the youngest and oldest children within a household.
ConclusionOur findings suggest that non-receipt of MMR1 by 24 months is ethnically patterned and more likely in areas of higher deprivation. Household-level analyses provide actionable insights into the characteristics of measles-susceptible households and opportunities for data-enabled primary care interventions to reduce vaccination inequalities and prevent measles outbreaks.
COVID-19 vaccination rates and related outcomes in adults with intellectual and developmental disabilities (IDD): An application of linked administrative health data to support Ontario’s COVID-19 response .
Authors: Troke Natalie , An Diana , Kim Eliane , Lunsky Yona , Balogh Robert , Plumptre Lesley 
Published: August 2022

ObjectivesEquitable vaccine distribution was essential in supporting Ontario’s COVID-19 response, particularly for persons with intellectual and developmental disabilities (IDD), who have been disproportionately impacted by the pandemic. An Applied Health Research Question (AHRQ) request through ICES, sought to report on COVID-19 vaccination uptake in adults with and without IDD.
ApproachTo examine the proportion of adults with IDD vaccinated for COVID-19, a request from the Ministry of Children, Community and Social Services (MCCSS) was approved by the ICES-AHRQ team. A secondary goal was to explore if vaccinated individuals with IDD experienced similar levels of protection from COVID-19 infection, to the general population. The open cohort was derived by linking vaccination events reported in Ontario COVID-19 Vaccine Data, between December 2020 to December 2021, to several administrative health databases. An algorithm was used to define IDD by a series of inpatient hospitalizations, emergency department and/or physician visits, with IDD diagnostic codes.
ResultsThe proportion who received at least two doses was similar between both groups (82% (IDD); 83% (non-IDD)). However, despite emerging evidence suggesting that high-risk populations should receive a third dose, a lower proportion of people with IDD (25%), compared to the general population without IDD (30%), had done so. The IDD subpopulation is generally younger, and partially explained the third dose findings when examined by age. Withal, adults with IDD vaccinated with at least two doses were mostly male (62% vs 48%), 18-29 years of age (44% vs 17%), and from the lowest neighborhood income quintile (26% vs 18%), compared to the non-IDD population, respectively. Cumulatively, adults with IDD had comparable rates of confirmed breakthrough case infections following vaccination (17%), to those without IDD (19%).
Conclusion/ImplicationsAdministrative health data and analytics through the ICES-AHRQ program were used in responding to COVID-19, and providing public health guidance, for those with IDD. To inform decision making and policy actions related to immediate vaccination strategies, MCCSS used such findings to target vaccination efforts in specific IDD subpopulations, across Ontario.
Linkage of multiple electronic health record datasets using a "spine linkage" approach compared to all "pairwise linkages".
Authors: Blake Helen , Sharples Linda , Harron Katie , Van der Meulen Jan , Walker Kate 
Published: August 2022

ObjectivesTo compare two approaches for linking multiple datasets: using all "pairwise linkages", linking each dataset to every other dataset; versus linking each dataset to a designated "spine dataset", by: considering the differences between these approaches, and illustrating using real-world data on patients undergoing emergency bowel cancer surgery.
ApproachWe linked an administrative hospital dataset (Hospital Episode Statistics; HES) capturing patients admitted to hospitals in England, and two clinical datasets comprising patients undergoing emergency bowel surgery (National Emergency Laparotomy Audit; NELA) and patients diagnosed with bowel cancer (National Bowel Cancer Audit; NBOCA), with study period from 31 October 2013 to 30 April 2018. We compared pairwise linkage to spine linkage, designating HES as the spine dataset, by considering the number of eligible patients linked by each approach, characteristics of linked patients, levels of missing data, and whether analysis results were sensitive to the approach used.
ResultsThe spine linkage approach resulted in an analysis cohort of 15,826 patients, equating to 98.3% of the 16,100 patients identified with the pairwise linkage approach. Of 274 additional patients captured in the pairwise approach, approximately two-thirds were only in the emergency surgery dataset (NELA) and one-third were only in the bowel cancer dataset (NBOCA). There were no systematic differences in patient characteristics between these analysis cohorts. Associations of patient and tumour characteristics with mortality, complications, and length of stay were not sensitive to the linkage approach. When eligibility criteria were applied before linkage, spine linkage included 14,509 patients (90.0% compared to pairwise linkage).
ConclusionSpine linkage can be an efficient alternative to pairwise linkage, if case ascertainment in the spine dataset and data quality of linkage variables are high. These aspects should be systematically evaluated in the nominated spine dataset before spine linkage. Results are sensitive to order of linkage steps.
Linking nationwide health and social registry data to informthe policy for Tuberculosis contact tracing in Brazil.
Authors: Sanchez Mauro N. , Pinto Priscila F.P.S. , Teixeira Camila S.S. , Nery Joilda S. , Rasella Davide , Silva Samila O.L. , Ichihara Maria Yury , Barreto Mauricio L. , Pescarini Julia M. 
Published: August 2022

ObjectivesMitigating the socioeconomic determinants of Tuberculosis (TB) and systematic screening of contacts and high-risk groups are targets of The World Health Organization (WHO) End TB Strategy by 2035. Our aim was to link socioeconomic information to TB datasets to inform policy makers in Brazil and contribute to addressing current challenges.
ApproachFollowing a signed technical cooperation agreement with the Ministry of Health (MoH), we linked nationwide data on 1.405.682 registries of TB diagnosed between 2004 and 2019 in Brazil to 131.697.800 demographic and socioeconomic registries from the 100 Million Brazilian Cohort (2001-2018) previously linked to nationwide mortality data. We established close links with TB managers to understand the database, clean and deduplicate registries and to analyse the data. We took advantage of the data structure, to set up a cohort of household contacts of TB patients and produce estimates of TB incidence by subgroups of demographic and socioeconomic characteristics.
ResultsThe interaction of the MoH was effective and facilitated by a robust TB Programme in the country. 567.999 (40,41%) TB cases were linked to the 100 Million Brazilian Cohort with high specificity (93.6%) and sensitivity (94.6%). Using family identifiers, we established the first TB case within a family unit (i.e., primary case) and followed their household contacts up to 15 years. We found the TB incidence among household contacts to be 427.8/100.000 person-years (95%CI 419.1-436.8). In the first year following the identification of the primary case, there was higher cumulative incidence among household contacts under 5 years of age, which was followed by a plateau of cases in this age group. Cummulative incidence in the other age groups presented a constant increase over time.
ConclusionThe close collaboration with the MoH, the development of an effective linkage algorithm and the availability of large socioeconomic data allowed for a unique analysis of the high incidence of TB among household contacts. Findings reinforce need for constant dialogue among stakeholders to strengthen case detection by primary health care.
ICES Data and Analytic Services: Eight Years Young.
Authors: Ho Minnie M. , Jovanovska Stefana , Novess Jenna , Skvirsky Dina , Saskin Refik , Victor J. Charles 
Published: August 2022

ObjectiveIn March 2014, ICES launched Data & Analytic Services (DAS), expanding the access to ICES data and analytics beyond ICES scientists and analytic staff. In eight years, DAS has grown and evolved to increase high quality services offered to an expanding client base of external researchers.
ApproachAt the inception of DAS, two services were offered to public sector researchers: data access and analytics. Data access enabled researchers to analyze coded record-level data through a secure virtual environment. Analytics, conducted by DAS staff in ICES analytic environment, provided researchers with risk-cleared summary level reports. In response to growing demand from an increasingly diverse range of researchers, ICES engaged in extensive consultations with internal and external stakeholders to re-evaluate and operationalize new services. Compliance with contractual obligations and Ontario law, organizational capacity to scale up, alignment with ICES’ mission, vision and values, were cornerstones in establishing new offerings.
ResultsAnalytic services became available to private sector researchers in June 2016. In March 2017, support for cohort and longitudinal follow-up studies became the newest service offering (researchers provided with a list of applicable individuals defined for the purposes of conducting publicly funded research). As more data assets become available to researchers, requests continue to increase in volume and complexity, particularly of projects seeking to import external data for linkage to ICES data. A second high performance computing virtual environment onboarded researchers September 2021 while the original analytic environment has undergone multiple upgrades, and will soon be fully refreshed. Regular solicitation of feedback has enabled DAS to increase staffing and diversify resources available which improves the client experience at all stages.
ConclusionsSince its inception, DAS has expanded from five to thirty personnel, grown and diversified its new and returning client base and has responded to demand for new services. DAS continues to provide high quality services which enable impactful research and is responsive to new opportunities for collaboration and service provision.
Who is your community? Co-designing a community engagement strategy for an emerging data platform.
Authors: Naude Kim , Parker Emily , McNaney Roisin , Daniel Michelle , Beare Richard , Srikanth Velandai , Andrew Nadine 
Published: August 2022

ObjectivesTo co-design with older Australian consumers and stakeholders a strategy for engaging the wider community with an emerging data platform, involving linked routinely collected electronic health data for research. To develop strategies to address consumer concerns of data use, privacy and safety.
ApproachThe National Centre for Healthy Ageing (NCHA) Data Platform aims to make better use of existing health data to lead transformative research. Facilitated workshops were conducted with consumer representatives in March 2022. Use case scenarios were created following interviews with NCHA researchers; these were used to facilitate discussion around benefits and challenges of health data related research. Predetermined questions were given to two participant groups to develop strategies to engage the broader community with the Data Platform; ideas were presented to the whole group to prompt further discussion. Workshops were audio-recorded; transcripts are being analysed using thematic data analysis.
ResultsTwo workshops were conducted (workshop 1=7 participants; workshop 2=9 participants). Participants were >65 years, of mixed gender (8 women; 8 men), used the same health service, and resided in the Frankston/Mornington Peninsula region of Victoria, Australia. Preliminary findings suggest an essential element to the design of an effective community engagement strategy with a data platform is the understanding of who the target community is (e.g. age, culture, and health/digital literacy). Conveyed information needs to be simple, clear and devoid of academic and/or technical jargon. Community engagement strategies should respect consumers’ genuine fear of who can access their data and concerns around whether their data is identifiable. Overall, participants expressed optimism in the NCHA Data Platform and its ability to directly impact their well-being.
ConclusionPreliminary findings from this study have identified effective strategies to engage the older community with an electronic health data platform, an often complex and technical concept. The co-design of a consumer engagement strategy allows the NCHA to broaden its network and ensure research outputs meet the needs of the older community.
Co-creating a social licence for using novel linked datasets for planning and research in Kent, Surrey and Sussex: results of deliberative focus groups and a creative workshop.
Authors: Ford Elizabeth , Stanley Kathryn , Rees-Roberts Melanie , Madzvamuse Anotida , Armes Jo , Giles Sarah 
Published: August 2022

ObjectivesIn Kent, Surrey and Sussex (KSS), linked health and social care datasets are in set-up phase in NHS integrated care systems (ICS), and governance models for using data for planning and research are under development. This represented an exceptional opportunity to consult with KSS citizens and work together to identify how ICSs in KSS can secure a social licence for data-linkage and data uses.
MethodsWe held online deliberative discussion focus groups asking KSS citizens to discuss the perceived benefits and risks of data-linkage for planning and research; to describe safeguards they expected around the data, and to describe how the public should be involved in, and communicated with, regarding governance and uses of datasets. We held one creative workshop in which participants artistically depicted their support or concerns around data.
Results79 KSS citizens took part in 5 focus groups, and 7 participants attended the creative workshop. There was widespread support for data-linkage to improve efficiency of services and information flows, with the expectation that this would improve patient experience. Proposed ICS governance models were acceptable, but participants identified four key values to ensure appropriate use: acknowledging experience of stigma and discrimination; public voices being heard; holding people to account; and keeping data trails and audits. Participants gave a range of suggestions for ensuring public involvement and communication would be accessible and reach a diverse audience, such as using community champions to ensure a range of contributors, using plain language, giving concise information, building trust through mutually respectful relationships, and valuing public contributions through appropriate payment.
ConclusionSocial licence theory describes expectations that organisations go beyond requirements of formal regulation and ensure transparent values of reciprocity, non-exploitation and service to the public good. Following findings from this project, ICSs in KSS are now in a good position to deliver social licence values, together with a strong public voice, to inform and determine governance arrangements for linked datasets in the region.