Dataset Information

Different approaches to improve cohort identification using electronic health records: X-linked hypophosphatemia as an example.

ABSTRACT: Electronic Health Records (EHRs) represent a source of high value data which is often underutilized because exploiting the information contained therein requires specialized techniques unavailable to the end user i.e. the physician or the investigator. Here I describe four simple and practical avenues that will allow the standard EHR end user to identify patient cohorts: the use of diagnostic codes from different international catalogues; a search in reports from complementary tests (e.g. radiographs or lab tests) for any result of interest; a free text search; or a drug prescription search in the patient's electronic prescription record. This medical approach is acquiring great importance in the field of rare diseases, and here I demonstrate its application with X-linked hypophosphatemia. The use of these four EHR questioning approaches makes finding a cohort of patients of any condition or disease feasible and manageable, and once each case record is checked, a well-defined cohort can be assembled.

SUBMITTER: Broseta JJ

PROVIDER: S-EPMC7882088 | biostudies-literature | 2021 Feb

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Different approaches to improve cohort identification using electronic health records: X-linked hypophosphatemia as an example.

Broseta Jose Jesus JJ

Intractable & rare diseases research 20210201 1

Electronic Health Records (EHRs) represent a source of high value data which is often underutilized because exploiting the information contained therein requires specialized techniques unavailable to the end user <i>i.e.</i> the physician or the investigator. Here I describe four simple and practical avenues that will allow the standard EHR end user to identify patient cohorts: the use of diagnostic codes from different international catalogues; a search in reports from complementary tests (<i>e ...[more]

PMID: 33614371

Similar Datasets

Project description:ObjectiveTo describe a novel England-wide electronic health record (EHR) resource enabling whole population research on covid-19 and cardiovascular disease while ensuring data security and privacy and maintaining public trust.DesignData resource comprising linked person level records from national healthcare settings for the English population, accessible within NHS Digital's new trusted research environment.SettingEHRs from primary care, hospital episodes, death registry, covid-19 laboratory test results, and community dispensing data, with further enrichment planned from specialist intensive care, cardiovascular, and covid-19 vaccination data.Participants54.4 million people alive on 1 January 2020 and registered with an NHS general practitioner in England.Main measures of interestConfirmed and suspected covid-19 diagnoses, exemplar cardiovascular conditions (incident stroke or transient ischaemic attack and incident myocardial infarction) and all cause mortality between 1 January and 31 October 2020.ResultsThe linked cohort includes more than 96% of the English population. By combining person level data across national healthcare settings, data on age, sex, and ethnicity are complete for around 95% of the population. Among 53.3 million people with no previous diagnosis of stroke or transient ischaemic attack, 98 721 had a first ever incident stroke or transient ischaemic attack between 1 January and 31 October 2020, of which 30% were recorded only in primary care and 4% only in death registry records. Among 53.2 million people with no previous diagnosis of myocardial infarction, 62 966 had an incident myocardial infarction during follow-up, of which 8% were recorded only in primary care and 12% only in death registry records. A total of 959 470 people had a confirmed or suspected covid-19 diagnosis (714 162 in primary care data, 126 349 in hospital admission records, 776 503 in covid-19 laboratory test data, and 50 504 in death registry records). Although 58% of these were recorded in both primary care and covid-19 laboratory test data, 15% and 18%, respectively, were recorded in only one.ConclusionsThis population-wide resource shows the importance of linking person level data across health settings to maximise completeness of key characteristics and to ascertain cardiovascular events and covid-19 diagnoses. Although this resource was initially established to support research on covid-19 and cardiovascular disease to benefit clinical care and public health and to inform healthcare policy, it can broaden further to enable a wide range of research.

Project description:To investigate the performance of parent-reported data in identifying physician-confirmed asthma.Validation study using linkage between the Avon Longitudinal Study of Parents and Children (ALSPAC) and electronic patient records held within the General Practice Research Database (GPRD).Participants were those eligible to participate in ALSPAC who also had a record in the GPRD; this included 765 individuals, just under 4% of ALSPAC-eligible participants. The analysis was based on 141 participants with complete parent-reported asthma data.The main GPRD outcome measure was whether a child had a diagnosis of asthma before they were nine. Parent-reported measures were doctor diagnosis of asthma (before mean age 7.5 years), various outcomes based on wheezing and breathlessness recorded longitudinally between 6 months and 8.5 years. Secondary outcomes were bronchial hyper-responsiveness (BHR), forced expiratory volume in 1 s/forced vital capacity ratio and skin prick test responses.Among the 141 participants with complete parent-reported data, 26 (18%) had an asthma diagnosis before age nine. Using general practitioner (GP)-recorded asthma as the gold standard, the question 'Has a doctor ever diagnosed your child with asthma?' was both sensitive (88.5%) and specific (95.7%). 'Ever wheezed' had the highest sensitivity (100%) but low specificity (60%). More specific definitions were obtained by restricting to those who had wheezed on more than one occasion, experienced frequent wheeze and/or wheezed after the age of 3, but these measures had low sensitivities. BHR only identified 50% of those with a GP-recorded diagnosis.Parental reports of a doctor's diagnosis agree well with a GP-recorded diagnosis. High specificity for asthma can be achieved by using detailed wheezing questions, although these definitions are likely to exclude mild cases of asthma. Our study shows that linkage between observational studies and electronic patient records has the potential to enhance epidemiological research.

Project description:IntroductionBy linking datasets, electronic records can be used to build large birth-cohorts, enabling researchers to cost-effectively answer questions relevant to populations over the life-course. Currently, around 5.8 million Palestinian refugees live in five settings: Jordan, Lebanon, Syria, West Bank, and Gaza Strip. The United Nations Relief and Works Agency for Palestine Refugees in the Near East (UNRWA) provides them with free primary health and elementary-school services. It maintains electronic records to do so.We aimed to establish a birth cohort of Palestinian refugees born between 1st January 2010 and 31st December 2020 living in five settings by linking mother obstetric records with child health and education records and to describe some of the cohort characteristics. In future, we plan to assess effects of size-at-birth on growth, health and educational attainment, among other questions.MethodsWe extracted all available data from 140 health centres and 702 schools across five settings, i.e. all UNRWA service users. Creating the cohort involved examining IDs and other data, preparing data, de-duplicating records, and identifying live-births, linking the mothers' and children's data using different deterministic linking algorithms, and understanding reasons for non-linkage.ResultsWe established a birth cohort of Palestinian refugees using electronic records of 972,743 live births. We found high levels of linkage to health records overall (83%), which improved over time (from 73% to 86%), and variations in linkage rates by setting: these averaged 93% in Gaza, 89% in Lebanon, 75% in Jordan, 73% in West Bank and 68% in Syria. Of the 423,580 children age-eligible to go to school, 47% went to UNRWA schools and comprised of 197,479 children with both health and education records, and 2,447 children with only education records. In addition to year and setting, other factors associated with non-linkage included mortality and having a non-refugee mother. Misclassification errors were minimal.ConclusionThis linked open birth-cohort is unique for refugees and the Arab region and forms the basis for many future studies, including to elucidate pathways for improved health and education in this vulnerable, understudied population. Our characterization of the cohort leads us to recommend using different sub-sets of the cohort depending on the research question and analytic purposes.

Dataset Information

Different approaches to improve cohort identification using electronic health records: X-linked hypophosphatemia as an example.

Publications

Different approaches to improve cohort identification using electronic health records: X-linked hypophosphatemia as an example.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets