Two sides of the coin:Patient and provider perceptions of health care delivery to patients from culturally and linguistically diverse backgrounds

BACKGROUND: Australia is a culturally diverse nation with one in seven Australians born in a non-English speaking country. Culturally and Linguistically Diverse (CALD) populations are at a high risk of developing preventable chronic diseases such as cardiovascular disease, type 2 diabetes mellitus, renal disease, and chronic respiratory disease, especially communities from the Pacific Islands, the Middle East, North Africa, the Indian subcontinent and China. Previous studies have shown that access to services may be a contributing factor. This study explores the experiences, attitudes and opinions of immigrants from different cultural and linguistic backgrounds and their health care providers with regard to chronic disease care. METHODS: Five focus groups were conducted comprising participants from an Arabic speaking background, or born in Sudan, China, Vietnam or Tonga. A total of 50 members participated. All focus groups were conducted in the participants’ language and facilitated by a trained multicultural health worker. In addition, 14 health care providers were interviewed by telephone. Interviews were digitally recorded and transcribed. All qualitative data were analysed with the assistance of QSR NVivo 8 software. RESULTS: Participants were generally positive about the quality and accessibility of health services, but the costs of health care and waiting times to receive treatment presented significant barriers. They expressed a need for greater access to interpreters and culturally appropriate communication and education. They mentioned experiencing racism and discriminatory practices. Health professionals recommended recruiting health workers from CALD communities to assist them to adequately elicit and address the needs of patients from CALD backgrounds. CONCLUSIONS: CALD patients, carers and community members as well as health professionals all highlighted the need for establishing culturally tailored programs for chronic disease prevention and management in CALD populations. Better health care can be achieved by ensuring that further investment in culturally specific programs and workforce development is in line with the number of CALD communities and their needs

Immunisation status of children receiving care and support in Wales: a national data linkage study

Background: In the UK, a robust childhood immunisation programme ensures children are offered protection against serious infections; identifying inequalities in vaccination coverage is essential. This is one of the first data linkage studies to examine coverage of primary, as well as pre-school booster and second dose of MMR vaccines, in children receiving support from social care services across Wales. Methods: By accessing records held within the Secure Anonymised Information Linkage (SAIL) Databank, vaccination status of children receiving social care and support between April 2016 and March 2021 (n = 24,540) was ascertained. This was achieved through linkage of the Children Receiving Care and Support (CRCS) Census and National Community Child Health Database which holds vaccination records for all children in Wales registered for NHS care. This sample was split into three groups – those children who had never been recorded on the Child Protection Register (CPR) or as ‘Looked After’ but in CRCS (n = 12,480), children ever on the CPR (n = 6,225) and those ever recorded as ‘Looked After’ but who were never on the CPR (n = 5,840). The comparison group of children and young people (CYP) never receiving welfare support consisted of 624,905 children. Results: Children receiving care or support were more likely to be up-to-date with all six vaccines (no recorded vaccines: 0.6–6.3%) compared to children in the comparison group (no recorded vaccines: 3–10.3%). However, of those who were vaccinated, they were less likely to be vaccinated in a timely manner; both early (5.2% vs. 22.2%; margin of error [ME] = 0.52, 95% CI [confidence interval] = −0.18 – −0.17, p < 0.001) and delayed vaccinations were more common (62.7% vs. 71.3%; ME = 0.58, 95% CI = 0.08–0.09, p < 0.001). Validation of the CRCS immunisation flag showed moderate levels of accuracy. Around 70% of immunisation flags were correct across all three groups. Discussion: Findings suggest a positive association between receiving services under a care and support plan and being up-to-date with immunisations; children receiving support under a care and support plan were more likely to have experienced early or late vaccinations, demonstrating that there is still more inter-disciplinary co-ordination and planning needed to improve these outcomes. Thus, identifying inequalities in vaccination coverage is essential to target interventions and to prioritise geographic areas for catch-up

Childhood asthma prevalence: cross-sectional record linkage study comparing parent-reported wheeze with general practitioner-recorded asthma diagnoses from primary care electronic health records in Wales

Introduction Electronic health records (EHRs) are increasingly used to estimate the prevalence of childhood asthma. The relation of these estimates to those obtained from parent-reported wheezing suggestive of asthma is unclear. We hypothesised that parent-reported wheezing would be more prevalent than general practitioner (GP)-recorded asthma diagnoses in preschool-aged children. Methods 1529 of 1840 (83%) Millennium Cohort Study children registered with GPs in the Welsh Secure Anonymised Information Linkage databank were linked. Prevalences of parent-reported wheezing and GP-recorded asthma diagnoses in the previous 12 months were estimated, respectively, from parent report at ages 3, 5, 7 and 11 years, and from Read codes for asthma diagnoses and prescriptions based on GP EHRs over the same time period. Prevalences were weighted to account for clustered survey design and non-response. Cohen’s kappa statistics were used to assess agreement. Results Parent-reported wheezing was more prevalent than GP-recorded asthma diagnoses at 3 and 5 years. Both diminished with age: by age 11, prevalences of parent-reported wheezing and GP-recorded asthma diagnosis were 12.9% (95% CI 10.6 to 15.4) and 10.9% (8.8 to 13.3), respectively (difference: 2% (−0.5 to 4.5)). Other GP-recorded respiratory diagnoses accounted for 45.7% (95% CI 37.7 to 53.9) and 44.8% (33.9 to 56.2) of the excess in parent-reported wheezing at ages 3 and 5 years, respectively. Conclusion Parent-reported wheezing is more prevalent than GP-recorded asthma diagnoses in the preschool years, and this difference diminishes in primary school aged children. Further research is needed to evaluate the implications of these differences for the characterisation of longitudinal childhood asthma phenotypes from EHRs

Immunisation status of children receiving care and support in Wales: a national data linkage study

BackgroundIn the UK, a robust childhood immunisation programme ensures children are offered protection against serious infections; identifying inequalities in vaccination coverage is essential. This is one of the first data linkage studies to examine coverage of primary, as well as pre-school booster and second dose of MMR vaccines, in children receiving support from social care services across Wales.MethodsBy accessing records held within the Secure Anonymised Information Linkage (SAIL) Databank, vaccination status of children receiving social care and support between April 2016 and March 2021 (n = 24,540) was ascertained. This was achieved through linkage of the Children Receiving Care and Support (CRCS) Census and National Community Child Health Database which holds vaccination records for all children in Wales registered for NHS care. This sample was split into three groups – those children who had never been recorded on the Child Protection Register (CPR) or as ‘Looked After’ but in CRCS (n = 12,480), children ever on the CPR (n = 6,225) and those ever recorded as ‘Looked After’ but who were never on the CPR (n = 5,840). The comparison group of children and young people (CYP) never receiving welfare support consisted of 624,905 children.ResultsChildren receiving care or support were more likely to be up-to-date with all six vaccines (no recorded vaccines: 0.6–6.3%) compared to children in the comparison group (no recorded vaccines: 3–10.3%). However, of those who were vaccinated, they were less likely to be vaccinated in a timely manner; both early (5.2% vs. 22.2%; margin of error [ME] = 0.52, 95% CI [confidence interval] = −0.18 – −0.17, p &lt; 0.001) and delayed vaccinations were more common (62.7% vs. 71.3%; ME = 0.58, 95% CI = 0.08–0.09, p &lt; 0.001). Validation of the CRCS immunisation flag showed moderate levels of accuracy. Around 70% of immunisation flags were correct across all three groups.DiscussionFindings suggest a positive association between receiving services under a care and support plan and being up-to-date with immunisations; children receiving support under a care and support plan were more likely to have experienced early or late vaccinations, demonstrating that there is still more inter-disciplinary co-ordination and planning needed to improve these outcomes. Thus, identifying inequalities in vaccination coverage is essential to target interventions and to prioritise geographic areas for catch-up

Integrating electronic health records from different sources across the UK: lessons from a record linkage study

Background Harmonisation of different data sources from various electronic health records (EHRs) across systems enhances the potential scope and granularity of data available to health data research. Objective To describe data harmonisation of routine electronic healthcare records in Wales and Scotland linked to a UK longitudinal birth cohort, the Millennium Cohort Study (MCS). Methods Comparable secondary care data was linked, with parental consent, to MCS information for 1838 and 1431 children participating in MCS and residing in Wales and Scotland, by assigning, respectively, unique Anonymised Linkage Fields to personbased records in the privacy protecting Secure Anonymised Information Linkage (SAIL) databank at Swansea University, and by the National Health Service (NHS) Information Standards Division. Survey and non-response weights were created to account for the clustered sample, sample attrition and consent to linkage. Heterogeneous variables from the Patient Episode Dataset for Wales, Emergency Department Data Set for Wales, Scottish Medical Record 01 and Accident and Emergency dataset for Scotland were harmonised enabling data to be pooled and standardised for research. Findings Overall linkage to harmonised health care data was achieved for 98.9% (99.9% for Wales and 97.6% for Scotland) of consented MCS participants. 66% of children experienced at least one hospital admission (total 5747 hospital admissions) up to their 14th birthday, while 60% attended A&E departments at least once (total 5221 attendances) between their 9th and 14th birthday. We managed date granularity by generating random dates of birth, standardising periods of data collection, identifying inconsistencies and then mapping and bridging differences in definitions of periods of care across countries and datasets. Conclusions Combining and harmonising data from multiple sources and linking them to information from a longitudinal cohort create useful resources for population health research. These methods are reproducible and can be utilised by other researchers and projects

Measuring the timeliness of childhood vaccinations: Using cohort data and routine health records to evaluate quality of immunisation services

Background: To achieve full benefits of vaccination programmes, high uptake and timely receipt of vaccinations are required. Objectives: To examine uptake and timeliness of infant and pre-school booster vaccines using cohort study data linked to health records. Methods: We included 1782 children, born between 2000 and 2001, participating in the Millennium Cohort Study and resident in Wales, whose parents gave consent for linkage to National Community Child Health Database records at the age seven year contact. We examined age at receipt, timeliness of vaccination (early, on-time, delayed, or never), and intervals between vaccine doses, based on the recommended schedule for children at that time, of the following vaccines: primary (diphtheria, tetanus, pertussis (DTP), polio, Meningococcal C (Men C), Haemophilus influenzae type b (Hib)); first dose of measles, mumps and rubella (MMR); and pre-school childhood vaccinations (DTP, polio, MMR). We compared parental report with child health recorded MMR vaccination status at age three years. Results: While 94% of children received the first dose of primary vaccines early or on time, this was lower for subsequent doses (82%, 65% and 88% for second and third doses and pre-school booster respectively). Median intervals between doses exceeded the recommended schedule for all but the first dose with marked variation between children. There was high concordance (97%) between parental reported and child health recorded MMR status. Conclusions: Routine immunisation records provide useful information on timely receipt of vaccines and can be used to assess the quality of childhood vaccination programmes. Parental report of MMR vaccine status is reliable

Harmonising data from different sources to conduct research using linked survey and routine datasets

Introduction Harmonization of different data sources from various electronic health records across systems enhances the potential scope and granularity of data available to health data research, providing more opportunities for research by improving the generalizability and effective sample size of a range of outcome metrics. Objectives and Approach This study describes data harmonisation for a UK longitudinal birth cohort, the Millennium Cohort Study (MCS) which was linked to routine inpatient and emergency department, and, where available, general practice and child health records for 1838 Welsh and 1431 Scottish consenting MCS participants. Datasets requiring harmonisation were: from Wales, Patient Episode Dataset for Wales (PEDW) and Emergency Department Data Set (EDDS) data and from Scotland, Scottish Medical Record 01 (SMR01) and Accident and Emergency dataset (A&E2). Heterogeneous variables were created by transforming variable names, concepts, codes to improve scope for analysis. Results A harmonized dataset of 2166 participants and 5747 hospital admissions were derived of cohort members who had at least 1 hospital inpatient or A&E event before their 14th birthday. Harmonisation included: dealing with date granularity by generating random dates of birth; standardising periods of data collection; identifying inconsistencies and then mapping and bridging differences in definitions of periods of care and levels of diagnostic and operational coding across countries and datasets. Conclusion/Implications Heterogeneous variables from different data sources were pooled and converted into standardised data for research, extending existing harmonisation work, including curation of a population based anonymously linkable longitudinal cohort. [AA1] These methods are reproducible and can be utilised by other researchers and projects applying to use these routine data sources

Linking consented cohort and routinely collected health data to enhance investigations into childhood obesity, asthma, infections, immunisations, and injuries

Background In longitudinal health research, combining the richness of cohort data to the extensiveness of routine data opens up new possibilities, providing information not available from one data source alone. In this study, we set out to extend information from a longitudinal birth cohort study by linking to the cohort child’s routine primary and secondary health care data. The resulting linked datasets will be used to examine health outcomes and patterns of health service utilisation for a set of common childhood health problems. We describe the experiences and challenges of acquiring and linking electronic health records for participants in a national longitudinal study, the UK Millennium Cohort Study (MCS). Method Written parental consent to link routine health data to survey responses of the MCS cohort member, mother and her partner was obtained for 90.7% of respondents when interviews took place at age seven years in the MCS. Probabilistic and deterministic linkage was used to link MCS cohort members to multiple routinely-collected health data sources in Wales and Scotland. Results Overall linkage rates for the consented population using country-specific health service data sources were 97.6% for Scotland and 99.9% for Wales. Linkage rates between different health data sources ranged from 65.3% to 99.6%. Issues relating to acquisition and linkage of data sources are discussed. Conclusions Linking longitudinal cohort participants with routine data sources is becoming increasingly popular in population data research. Our results suggest that this is a valid method to enhance information held in both sources of data

Using consented health record linkage in a longitudinal cohort study

ABSTRACT Objectives The aim of this project is to address important issues relevant to children’s health This will be done by enhancing information collected in the longitudinal, UK-wide Millennium Cohort Study (MCS) by linking participating children to their routine health records. These issues include: health service implications of early life onset of obesity and overweight; timeliness of immunisations; association of infections with asthma and allergic disorders in childhood; and burden of disease due to childhood injuries. Approach The MCS comprises information on the social, economic and health-related circumstances of children surveyed at ages 9 months, 3, 5, 7, 11 and 14 years. At the age 7 interview, 12517 (89.1%) of the 14043 adults with parental responsibility consented for information from their child’s routine heath records to be released to the MCS (a). Routine health records have been requested for Wales, England and Scotland to be linked to MCS responses within the Secure Anonymised Information Linkage Databank at Swansea University. Data will be analysed using weights for non-response, non-consent and non-linkage and the linkage reported according to the RECORD guidelines (b). Results To date, all 1881 MCS children with valid consent who live or have lived in Wales have been linked by assigning an Anonymous Linking Field (ALF) to each individual which can be mapped across multiple datasets without risk of identification (c). Of these children, 1365 (72.3%) had experienced at least one hospital admission by the age of 14 years. Risk of admission by each of the survey ages for boys and girls separately will be calculated adjusting for non-response at different sweeps. These children have also been linked to their immunisation records (n = 1872), Emergency Department attendances (n = 1276), and available GP records (n = 1151) to enable analyses in fulfilment of the project objectives. Conclusions Routine health records are a potentially valuable enhancement to longitudinal studies, allowing evaluation of questions of relevance to public health and health services, and the completeness and consistency of records from these different sources to be addressed. References a. Shepherd, P. (2013) Consent to linkage to child health data ISBN 978-1-906929-59-6 b. Benchimol, E.I. et al (2015) DOI: 10.1371/journal.pmed.1001885 c. Ford, D.V. et al (2009) DOI: 10.1186/1472-6963-9-15