Examining the quality and population representativeness of linked survey and administrative data: guidance and illustration using linked 1958 National Child Development Study and Hospital Episode Statistics data.

Introduction: Recent years have seen an increase in linkages between survey and administrative data. It is important to evaluate the quality of such data linkages to discern the likely reliability of ensuing research. Evaluation of linkage quality and bias can be conducted using different approaches, but many of these are not possible when there is a separation of processes for linkage and analysis to help preserve privacy, as is typically the case in the UK (and elsewhere). Objectives: We aimed to describe a suite of generalisable methods to evaluate linkage quality and population representativeness of linked survey and administrative data which remain tractable when users of the linked data are not party to the linkage process itself. We emphasise issues particular to longitudinal survey data throughout. Methods: Our proposed approaches cover several areas: i) Linkage rates, ii) Selection into response, linkage consent and successful linkage, iii) Linkage quality, and iv) Linked data population representativeness. We illustrate these methods using a recent linkage between the 1958 National Child Development Study (NCDS; a cohort following an initial 17,415 people born in Great Britain in a single week of 1958) and Hospital Episode Statistics (HES) databases (containing important information regarding admissions, accident and emergency attendances and outpatient appointments at NHS hospitals in England). Results: Our illustrative analyses suggest that the linkage quality of the NCDS-HES data is high and that the linked sample maintains an excellent level of population representativeness with respect to the single dimension we assessed. Conclusions: Through this work we hope to encourage providers and users of linked data resources to undertake and publish thorough evaluations. We further hope that providing illustrative analyses using linked NCDS-HES data will improve the quality and transparency of research using this particular linked data resource.

Resilience in rural health system.

INTRODUCTION: Current literature emphasises the importance of resilience in health care. Studies have shown that lack of resilience not only leads to adverse clinical outcomes but is also associated with burnout and long-term stress in clinicians. Resource-limited rural settings in the United States often impose unique stressors, and thus, it is critical to examine resilience of health care providers practicing rural medicine. METHODS: An anonymous REDCap survey was completed by medical students, residents and attending physicians between 7 April 2021 and 18 May 2022. The primary outcome of resilience was measured by the Connor-Davidson Resilience Scale 10 (CD-RISC-10© ). RESULTS: Survey takers scored moderately on the resilience scale (30.64 on a 40-point scale). The first quartile of respondents scored between 0 and 28; the second quartile scored between 29 and 30; the third quartile scored between 31 and 35; the fourth quartile scored between 36 and 40. Age and years of service were not correlated with resilience. However, survey takers who had been exposed to trauma informed care scored significantly higher on the resilience scale (32.37 vs. 28.85, p = 0.021). The level of resilience when compared by profession was found to be comparable among medical students, residents and attending physicians. CONCLUSION: Individuals scoring in the first two quartiles of the CD-RISC-10© perhaps indicate need for support as they are having difficulty coping with stress. Health care organisations should provide resilience training to support the wellness and mental health of their staff. Moreover, dedicated efforts should be made toward creating trauma-informed health care organisations as exposure to the topic of trauma informed care had a significant positive impact on resilience.

Using linked administrative data to aid the handling of non-response and restore sample representativeness in cohort studies: the 1958 national child development study and hospital episode statistics data.

BACKGROUND: There is growing interest in whether linked administrative data have the potential to aid analyses subject to missing data in cohort studies. METHODS: Using linked 1958 National Child Development Study (NCDS; British cohort born in 1958, n = 18,558) and Hospital Episode Statistics (HES) data, we applied a LASSO variable selection approach to identify HES variables which are predictive of non-response at the age 55 sweep of NCDS. We then included these variables as auxiliary variables in multiple imputation (MI) analyses to explore the extent to which they helped restore sample representativeness of the respondents together with the imputed non-respondents in terms of early life variables (father's social class at birth, cognitive ability at age 7) and relative to external population benchmarks (educational qualifications and marital status at age 55). RESULTS: We identified 10 HES variables that were predictive of non-response at age 55 in NCDS. For example, cohort members who had been treated for adult mental illness had more than 70% greater odds of bring non-respondents (odds ratio 1.73; 95% confidence interval 1.17, 2.51). Inclusion of these HES variables in MI analyses only helped to restore sample representativeness to a limited extent. Furthermore, there was essentially no additional gain in sample representativeness relative to analyses using only previously identified survey predictors of non-response (i.e. NCDS rather than HES variables). CONCLUSIONS: Inclusion of HES variables only aided missing data handling in NCDS to a limited extent. However, these findings may not generalise to other analyses, cohorts or linked administrative datasets. This work provides a demonstration of the use of linked administrative data for the handling of missing cohort data which we hope will act as template for others.

Concerns and recommendations for using Amazon MTurk for eating disorder research.

OBJECTIVE: Our original aim was to validate and norm common eating disorder (ED) symptom measures in a large, representative community sample of transgender adults in the United States. We recruited via Amazon Mechanical Turk (MTurk), a popular online recruitment and data collection platform both within and outside of the ED field. We present an overview of our experience using MTurk. METHOD: Recruitment began in Spring 2020; our original target N was 2,250 transgender adults stratified evenly across the United States. Measures included a demographics questionnaire, the Eating Disorder Examination-Questionnaire, and the Eating Attitudes Test-26. Consistent with current literature recommendations, we implemented a comprehensive set of attention and validity measures to reduce and identify bot responding, data farming, and participant misrepresentation. RESULTS: Recommended validity and attention checks failed to identify the majority of likely invalid responses. Our collection of two similar ED measures, thorough weight history assessment, and gender identity experiences allowed us to examine response concordance and identify impossible and improbable responses, which revealed glaring discrepancies and invalid data. Furthermore, qualitative data (e.g., emails received from MTurk workers) raised concerns about economic conditions facing MTurk workers that could compel misrepresentation. DISCUSSION: Our results strongly suggest most of our data were invalid, and call into question results of recently published MTurk studies. We assert that caution and rigor must be applied when using MTurk as a recruitment tool for ED research, and offer several suggestions for ED researchers to mitigate and identify invalid data.

Collection of genetic data at scale for a nationally representative population: the UK Millennium Cohort Study.

A DNA bank has been created from the Millennium Cohort Study (MCS) saliva samples. A total of 23,336 samples are available, from 9,259 cohort members (4,630 males and 4,629 females), 8,898 mothers and 5,179 fathers. There are 4,533 mother, child, father 'triads'. This paper describes the collection of the saliva samples from cohort members and their biological parents in the MCS. It analyses response rates and predictors of response, and details the DNA extraction, genotyping and imputation procedures performed on the data.

Views on social media and its linkage to longitudinal data from two generations of a UK cohort study.

Background: Cohort studies gather huge volumes of information about a range of phenotypes but new sources of information such as social media data are yet to be integrated. Participant's long-term engagement with cohort studies, as well as the potential for their social media data to be linked to other longitudinal data, could provide novel advances but may also give participants a unique perspective on the acceptability of this growing research area. Methods: Two focus groups explored participant views towards the acceptability and best practice for the collection of social media data for research purposes. Participants were drawn from the Avon Longitudinal Study of Parents and Children cohort; individuals from the index cohort of young people (N=9) and from the parent generation (N=5) took part in two separate 90-minute focus groups. The discussions were audio recorded and subjected to qualitative analysis. Results: Participants were generally supportive of the collection of social media data to facilitate health and social research. They felt that their trust in the cohort study would encourage them to do so. Concern was expressed about the collection of data from friends or connections who had not consented. In terms of best practice for collecting the data, participants generally preferred the use of anonymous data derived from social media to be shared with researchers. Conclusion: Cohort studies have trusting relationships with their participants; for this relationship to extend to linking their social media data with longitudinal information, procedural safeguards are needed. Participants understand the goals and potential of research integrating social media data into cohort studies, but further research is required on the acquisition of their friend's data. The views gathered from participants provide important guidance for future work seeking to integrate social media in cohort studies.

Predicting Successful Laparoendoscopic Transhiatal Esophagectomy (THE) by Mediastinal Height Measurement.

BACKGROUND: Laparoendoscopic transhiatal esophagectomy (THE) provides advantages over traditional THE by not only avoiding laparotomy but by also allowing more precise esophageal mobilization. Occasionally, the length of the gastric conduit is insufficient to allow delivery into the neck after laparoscopic mobilization and requires laparotomy to complete the procedure. We hypothesize that the need for laparotomy will correlate with the measurement of mediastinal height (distance from thoracic vertebrae T1-T12) on chest CT. METHODS: Medical records of all patients who underwent attempted laparoendoscopic-assisted THE at a tertiary referral center between March 1, 2003 and January 31, 2019 were reviewed. Patients' mediastinal height was measured using computed tomography (CT) imaging of the chest by investigators and analyzed for correlation between mediastinal height and successful completion of a totally laparoendoscopic procedure. RESULTS: A total of 21 cases met inclusion criteria: 9 successful laparoendoscopic THE procedures and 12 failed laparoendoscopic THE procedures (those requiring addition of a mini-laparotomy or thoracotomy). The mean mediastinal length for successful laparoendoscopic surgery was 23.5 cm, whereas the mean mediastinal length for failed laparoscopic surgeries was 24.8 cm (P = .03). Patient's overall height was not found to correlate with the need for conversion. CONCLUSIONS: Shorter mediastinal length is associated with successful laparoendoscopic or laparoscopic THE. This information is readily available to clinicians from routine preoperative staging studies (chest CT) and may be used to potentially predict the success rate of a totally laparoendoscopic approach and aid in patient selection. Further prospective evaluation of these findings is warranted.

Using New Technologies for Time Diary Data Collection: Instrument Design and Data Quality Findings from a Mixed-Mode Pilot Survey.

Recent years have witnessed a steady growth of time-use research, driven by the increased research and policy interest in population activity patterns and their associations with long-term outcomes. There is recent interest in moving beyond traditional paper-administered time diaries to use new technologies for data collection in order to reduce respondent burden and administration costs, and to improve data quality. This paper presents two novel diary instruments that were employed by a large-scale multi-disciplinary cohort study in order to obtain information on the time allocation of adolescents in the United Kingdom. A web-administered diary and a smartphone app were created, and a mixed-mode data collection approach was followed: cohort members were asked to choose between these two modes, and those who were unable or refused to use the web/app modes were offered a paper diary. Using data from a pilot survey of 86 participants, we examine diary data quality indicators across the three modes. Results suggest that the web and app modes yield an overall better time diary data quality than the paper mode, with a higher proportion of diaries with complete activity and contextual information. Results also show that the web and app modes yield a comparable number of activity episodes to the paper mode. These results suggest that the use of new technologies can improve diary data quality. Future research using larger samples should systematically investigate selection and measurement effects in mixed-mode time-use survey designs.

Predictors of non-response in a UK-wide cohort study of children's accelerometer-determined physical activity using postal methods.

OBJECTIVES: To investigate the biological, social, behavioural and environmental factors associated with non-consent, and non-return of reliable accelerometer data (≥2 days lasting ≥10 h/day), in a UK-wide postal study of children's activity. DESIGN: Nationally representative prospective cohort study. SETTING: Children born across the UK, between 2000 and 2002. PARTICIPANTS: 13 681 7 to 8-year-old singleton children who were invited to wear an accelerometer on their right hip for 7 consecutive days. Consenting families were posted an Actigraph GT1M accelerometer and asked to return it by post. PRIMARY OUTCOME MEASURES: Study consent and reliable accelerometer data acquisition. RESULTS: Consent was obtained for 12 872 (94.5%) interviewed singletons, of whom 6497 (50.5%) returned reliable accelerometer data. Consent was less likely for children with a limiting illness or disability, children who did not have people smoking near them, children who had access to a garden, and those who lived in Northern Ireland. From those who consented, reliable accelerometer data were less likely to be acquired from children who: were boys; overweight/obese; of white, mixed or 'other' ethnicity; had an illness or disability limiting daily activity; whose mothers did not have a degree; who lived in rented accommodation; who exercised once a week or less; who had been breastfed; were from disadvantaged wards; had younger mothers or lone mothers; or were from households with just one, or more than three children. CONCLUSIONS: Studies need to encourage consent and reliable data return in the wide range of groups we have identified to improve response and reduce non-response bias. Additional efforts targeted at such children should increase study consent and data acquisition while also reducing non-response bias. Adjustment must be made for missing data that account for missing data as a non-random event.

Linking Millennium Cohort data to birth registration and hospital episode records.

The Millennium Cohort Study of 18,818 UK babies born in 2000-02 interviewed parents when the baby was 9 months old. Time constraints on the interview limited the amount of health-related questions that could be included. The aim of this study was to augment interview data with information from birth registrations and hospital records. It also provided an opportunity to assess the accuracy of the data acquired and parents' recall of the information on pregnancy and delivery. Deterministic and probabilistic matching were used to obtain information from birth registration and hospital records. Investigation into the accuracy of the matches obtained was undertaken. The records received were checked for range, consistency and completion. Birth registration data were obtained for 99% of those who gave consent. The number of additional variables gained ranged from six in Northern Ireland to 16 in Scotland. Hospital record data were obtained for 83% of those who gave consent. The additional general and maternity-related variables gained ranged from 55 in Scotland to 76 in England. Completion of available health record variables ranged from 28% to 100% across all UK countries. Linkage to birth registration and hospital records in order to augment Millennium Cohort Study data with routinely collected data was successful. The variables gained by linkage have added considerable value to the cohort study and validated some of the mother's responses.

Mother's consent to linkage of survey data with her child's birth records in a multi-ethnic national cohort study.

BACKGROUND: The increased use of computer-based records has facilitated linkage of routine data with that obtained for research. When children are involved, parental consent for linkage is usually required. The Millennium Cohort Study, of 18,819 UK babies born in 2000-02, over-sampled families from disadvantaged and ethnic wards, providing the opportunity to investigate factors associated with mother's consent to access her child's birth records. METHODS: Factors considered included ward type and mother's socioeconomic status, ethnicity, education, age, and language. Logistic regression was used to investigate the relationship of these factors with consent. RESULTS: Consent for linkage to birth register and/or hospital maternity data was obtained from 92% of the cohort mothers. The proportions consenting differed according to the mother's country of residence, age, and education, with consent being less likely among minority ethnic group mothers, lone parents, and those with higher degrees or no qualifications. Where interviews had been translated, consent was significantly less likely if the interpreter was a male. CONCLUSION: A large proportion of mothers who were interviewed gave permission for linkage. However, there were some groups who were less likely to do so, particularly those from minority ethnic groups. These sources of non-consent bias should be taken into account when analysing linked data from socially and ethnically mixed populations. Efforts should be made to understand the reasons for non-consent, which in turn will help determine the best ways to encourage more mothers to consent in future.