How Registries Can Help Performance Measurement Improve Care

Suggests ways to better utilize databases of clinical information to evaluate care processes and outcomes and improve measurements of healthcare quality and costs, comparative clinical effectiveness research, and medical product safety surveillance

Utilising identifier error variation in linkage of large administrative data sources.

BACKGROUND: Linkage of administrative data sources often relies on probabilistic methods using a set of common identifiers (e.g. sex, date of birth, postcode). Variation in data quality on an individual or organisational level (e.g. by hospital) can result in clustering of identifier errors, violating the assumption of independence between identifiers required for traditional probabilistic match weight estimation. This potentially introduces selection bias to the resulting linked dataset. We aimed to measure variation in identifier error rates in a large English administrative data source (Hospital Episode Statistics; HES) and to incorporate this information into match weight calculation. METHODS: We used 30,000 randomly selected HES hospital admissions records of patients aged 0-1, 5-6 and 18-19 years, for 2011/2012, linked via NHS number with data from the Personal Demographic Service (PDS; our gold-standard). We calculated identifier error rates for sex, date of birth and postcode and used multi-level logistic regression to investigate associations with individual-level attributes (age, ethnicity, and gender) and organisational variation. We then derived: i) weights incorporating dependence between identifiers; ii) attribute-specific weights (varying by age, ethnicity and gender); and iii) organisation-specific weights (by hospital). Results were compared with traditional match weights using a simulation study. RESULTS: Identifier errors (where values disagreed in linked HES-PDS records) or missing values were found in 0.11% of records for sex and date of birth and in 53% of records for postcode. Identifier error rates differed significantly by age, ethnicity and sex (p < 0.0005). Errors were less frequent in males, in 5-6 year olds and 18-19 year olds compared with infants, and were lowest for the Asian ethic group. A simulation study demonstrated that substantial bias was introduced into estimated readmission rates in the presence of identifier errors. Attribute- and organisational-specific weights reduced this bias compared with weights estimated using traditional probabilistic matching algorithms. CONCLUSIONS: We provide empirical evidence on variation in rates of identifier error in a widely-used administrative data source and propose a new method for deriving match weights that incorporates additional data attributes. Our results demonstrate that incorporating information on variation by individual-level characteristics can help to reduce bias due to linkage error

Undiagnosed dementia in primary care: A record linkage study

BackgroundThe number of people living with dementia is greater than the number with a diagnosis of dementia recorded in primary care. This suggests that a significant number are living with dementia that is undiagnosed. Little is known about this group and there is little quantitative evidence regarding the consequences of diagnosis for people with dementia.ObjectivesThe aims of this study were to (1) describe the population meeting the criteria for dementia but without diagnosis, (2) identify predictors of being diagnosed and (3) estimate the effect of diagnosis on mortality, move to residential care, social participation and well-being.DesignA record linkage study of a subsample of participants (n = 598) from the Cognitive Function and Ageing Study II (CFAS II) (n = 7796), an existing cohort study of the population of England aged ≥ 65 years, with standardised validated assessment of dementia and consent to access medical records.Data sourcesData on dementia diagnoses from each participant’s primary care record and covariate and outcome data from CFAS II.SettingA population-representative cohort of people aged ≥ 65 years from three regions of England between 2008 and 2011.ParticipantsA total of 598 CFAS II participants, which included all those with dementia who consented to medical record linkage (n = 449) and a stratified sample without dementia (n = 149).Main outcome measuresThe main outcome was presence of a diagnosis of dementia in each participant’s primary care record at the time of their CFAS II assessment(s). Other outcomes were date of death, cognitive performance scores, move to residential care, hospital stays and social participation.ResultsAmong people with dementia, the proportion with a diagnosis in primary care was 34% in 2008–11 and 44% in 2011–13. In both periods, a further 21% had a record of a concern or a referral but no diagnosis. The likelihood of having a recorded diagnosis increased with severity of impairment in memory and orientation, but not with other cognitive impairment. In multivariable analysis, those aged ≥ 90 years and those age

Variation in compulsory psychiatric inpatient admission in England:a cross-sectional, multilevel analysis

Background: Rates of compulsory admission have increased in England in recent decades, and this trend is accelerating. Studying variation in rates between people and places can help identify modifiable causes. Objectives: To quantify and model variances in the rate of compulsory admission in England at different spatial levels and to assess the extent to which this was explained by characteristics of people and places. Design: Cross-sectional analysis using multilevel statistical modelling. Setting: England, including 98% of Census lower layer super output areas (LSOAs), 95% of primary care trusts (PCTs), 93% of general practices and all 69 NHS providers of specialist mental health services. Participants: 1,287,730 patients. Main outcome measure: The study outcome was compulsory admission, defined as time spent in an inpatient mental illness bed subject to the Mental Health Act (2007) in 2010/11. We excluded patients detained under sections applying to emergency assessment only (including those in places of safety), guardianship or supervision of community treatment. The control group comprised all other users of specialist mental health services during the same period. Data sources: The Mental Health Minimum Data Set (MHMDS). Data on explanatory variables, characterising each of the spatial levels in the data set, were obtained from a wide range of sources, and were linked using MHMDS identifiers. Results: A total of 3.5% of patients had at least one compulsory admission in 2010/11. Of (unexplained) variance in the null model, 84.5% occurred between individuals. Statistically significant variance occurred between LSOAs [6.7%, 95% confidence interval (CI) 6.2% to 7.2%] and provider trusts (6.9%, 95% CI 4.3% to 9.5%). Variances at these higher levels remained statistically significant even after adjusting for a large number of explanatory variables, which together explained only 10.2% of variance in the study outcome. The number of provider trusts whose observed rate of compulsory admission differed from the model average to a statistically significant extent fell from 45 in the null model to 20 in the fully adjusted model. We found statistically significant associations between compulsory admission and age, gender, ethnicity, local area deprivation and ethnic density. There was a small but statistically significant association between (higher) bed occupancy and compulsory admission, but this was subsequently confounded by other covariates. Adjusting for PCT investment in mental health services did not improve model fit in the fully adjusted models. Conclusions: This was the largest study of compulsory admissions in England. While 85% of the variance in this outcome occurred between individuals, statistically significant variance (around 7% each) occurred between places (LSOAs) and provider trusts. This higher-level variance in compulsory admission remained largely unchanged even after adjusting for a large number of explanatory variables. We were constrained by data available to us, and therefore our results must be interpreted with caution. We were also unable to consider many hypotheses suggested by the service users, carers and professionals who we consulted. There is an imperative to develop and evaluate interventions to reduce compulsory admission rates. This requires further research to extend our understanding of the reasons why these rates remain so high. Funding: The National Institute for Health Research Health Services and Delivery Research programme

Privacy preserving record linkage in the presence of missing values

© 2017 The problem of record linkage is to identify records from two datasets, which refer to the same entities (e.g. patients). A particular issue of record linkage is the presence of missing values in records, which has not been fully addressed. Another issue is how privacy and confidentiality can be preserved in the process of record linkage. In this paper, we propose an approach for privacy preserving record linkage in the presence of missing values. For any missing value in a record, our approach imputes the similarity measure between the missing value and the value of the corresponding field in any of the possible matching records from another dataset. We use the k-NNs (k Nearest Neighbours in the same dataset) of the record with the missing value and their distances to the record for similarity imputation. For privacy preservation, our approach uses the Bloom filter protocol in the settings of both standard privacy preserving record linkage without missing values and privacy preserving record linkage with missing values. We have conducted an experimental evaluation using three pairs of synthetic datasets with different rates of missing values. Our experimental results show the effectiveness and efficiency of our proposed approach