scholarly journals Linked electronic health records for research on a nationwide cohort of more than 54 million people in England: data resource

BMJ ◽  
2021 ◽  
pp. n826
Author(s):  
Angela Wood ◽  
Rachel Denholm ◽  
Sam Hollings ◽  
Jennifer Cooper ◽  
Samantha Ip ◽  
...  

Abstract Objective To 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. Design Data resource comprising linked person level records from national healthcare settings for the English population, accessible within NHS Digital’s new trusted research environment. Setting EHRs 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. Participants 54.4 million people alive on 1 January 2020 and registered with an NHS general practitioner in England. Main measures of interest Confirmed 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. Results The 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. Conclusions This 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.

2021 ◽  
Author(s):  
Angela Wood ◽  
Rachel Denholm, ◽  
Sam Hollings ◽  
Jennifer Anne Cooper ◽  
Samantha Ip ◽  
...  

Objectives: Describe a new England-wide electronic health record (EHR) resource enabling whole population research on Covid-19 and cardiovascular disease whilst ensuring data security and privacy and maintaining public trust. Design: Cohort comprising linked person-level records from national healthcare settings for the English population accessible within the new NHS Digital Trusted Research Environment. Setting: EHRs 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. Participants: 54.4 million people alive on 1st January 2020 and registered with an NHS general practitioner in England. Main measures of interest: Confirmed and suspected Covid-19 diagnoses, exemplar cardiovascular conditions (incident stroke or transient ischaemic attack (TIA) and incident myocardial infarction (MI)) and all-cause mortality between 1st January and 31st October 2020. Results: The linked cohort includes over 96% of the English population. By combining person-level data across national healthcare settings, data on age, sex and ethnicity are complete for over 95% of the population. Among 53.2M people with no prior diagnosis of stroke/TIA, 98,721 had an incident stroke/TIA, of which 30% were recorded only in primary care and 4% only in death registry records. Among 53.1M people with no prior history of MI, 62,966 had an incident MI, of which 8% were recorded only in primary care and 12% only in death records. A total of 959,067 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 48,433 participants in death registry records). While 58% of these were recorded in both primary care and Covid-19 laboratory test data, 15% and 18% respectively were recorded in only one. Conclusions: This population-wide resource demonstrates the importance of linking person-level data across health settings to maximize completeness of key characteristics and to ascertain cardiovascular events and Covid-19 diagnoses. Although established initially to support research on Covid-19 and cardiovascular disease to benefit clinical care and public health and to inform health care policy, it can broaden further to enable a very wide range of research.


2019 ◽  
Vol 10 (S1) ◽  
Author(s):  
Anoop D. Shah ◽  
Emily Bailey ◽  
Tim Williams ◽  
Spiros Denaxas ◽  
Richard Dobson ◽  
...  

Abstract Background Free text in electronic health records (EHR) may contain additional phenotypic information beyond structured (coded) information. For major health events – heart attack and death – there is a lack of studies evaluating the extent to which free text in the primary care record might add information. Our objectives were to describe the contribution of free text in primary care to the recording of information about myocardial infarction (MI), including subtype, left ventricular function, laboratory results and symptoms; and recording of cause of death. We used the CALIBER EHR research platform which contains primary care data from the Clinical Practice Research Datalink (CPRD) linked to hospital admission data, the MINAP registry of acute coronary syndromes and the death registry. In CALIBER we randomly selected 2000 patients with MI and 1800 deaths. We implemented a rule-based natural language engine, the Freetext Matching Algorithm, on site at CPRD to analyse free text in the primary care record without raw data being released to researchers. We analysed text recorded within 90 days before or 90 days after the MI, and on or after the date of death. Results We extracted 10,927 diagnoses, 3658 test results, 3313 statements of negation, and 850 suspected diagnoses from the myocardial infarction patients. Inclusion of free text increased the recorded proportion of patients with chest pain in the week prior to MI from 19 to 27%, and differentiated between MI subtypes in a quarter more patients than structured data alone. Cause of death was incompletely recorded in primary care; in 36% the cause was in coded data and in 21% it was in free text. Only 47% of patients had exactly the same cause of death in primary care and the death registry, but this did not differ between coded and free text causes of death. Conclusions Among patients who suffer MI or die, unstructured free text in primary care records contains much information that is potentially useful for research such as symptoms, investigation results and specific diagnoses. Access to large scale unstructured data in electronic health records (millions of patients) might yield important insights.


2020 ◽  
Vol 70 (693) ◽  
pp. e294-e302
Author(s):  
Chantal Balasooriya-Smeekens ◽  
Andrew Bateman ◽  
Jonathan Mant ◽  
Anna De Simoni

BackgroundEvidence about how primary care can best enable survivors of transient ischaemic attack (TIA)/stroke return to work is limited.AimThis study explored the role of primary care in supporting survivors of transient ischaemic attack (TIA)/stroke return to work with stakeholders from a local UK community.DesignA qualitative study using framework analysis.MethodFour focus groups were carried out in Cambridgeshire, UK, between September and November 2015. The 18 participants included survivors of TIA/stroke, carers, an employer representative, GPs, occupational therapists (OTs), and clinical commissioners.ResultsThere was a mismatch between patient and carer needs and what is provided by primary care. This included: lack of GP awareness of invisible impairments; uncertainty how primary care could help in time-limited consultations; and complexity of return-to-work issues. Primary care physicians were not aware of relevant services they could refer patients to, such as OT support. In addition, there was an overall lack of coordination between different stakeholders in the return-to-work process. Linking with other services was considered important but challenging because of ongoing changes in service structure and the commissioning model. Suggestions for improvement include: a central contact in primary care for signposting to available services; a rehabilitation assessment integrated with the electronic record; and a patient-held shared-care plan at discharge from stroke wards.ConclusionImproving the role for primary care in helping survivors of TIA/stroke return to work is challenging. However, primary care could play a central role in initiating/coordinating vocational rehabilitation. Through focus group discussions with stakeholders from a local community, patients, carers, and clinical commissioners were able to put forward concrete proposals to address the barriers identified.


Author(s):  
X Huang ◽  
N Grimmond ◽  
G Kontorinis

Abstract Background Magnetic resonance imaging of the internal auditory meatus frequently detects incidental white matter hyperintensities. This study investigated the association between these and the risk of stroke and transient ischaemic attack, or myocardial infarction. Methods The records of patients with incidental white matter hyperintensities were reviewed, and data were collected on: age, sex, cardiovascular risk factors, and incidence of stroke and transient ischaemic attack, or myocardial infarction, five years later. The risk factors associated with vascular events were explored. Results Of 6978 patients, 309 (4.4 per cent) had incidental white matter hyperintensities. Of these, 20 (6.5 per cent) had a stroke or transient ischaemic attack within five years, and 5 (1.7 per cent) had a myocardial infarction. The number of cardiovascular risk factors was significantly associated with the incidence of stroke and transient ischaemic attack (p = 0.004), and myocardial infarction (p = 0.023). Conclusion The number of cardiovascular risk factors predicts the likelihood of vascular events; appropriate risk factor management is recommended for patients with incidental white matter hyperintensities of presumed vascular origin.


Author(s):  
Norazida Ab Rahman ◽  
Wan Chung Law ◽  
Wan Asyraf Wan Zaidi ◽  
Zariah Abdul Aziz ◽  
Norsima Nazifah Sidek ◽  
...  

Objective: This study aimed to assess effectiveness and safety outcomes of antiplatelet therapy for secondary prevention among patients with ischaemic stroke or transient ischaemic attack (TIA) in Malaysia. Method: Patients with a first ischaemic stroke/TIA between 2014 and 2017 were identified from stroke registry and data was linked with other data sources for information on antiplatelet exposure and outcome events. Exposure was defined as antiplatelet therapy at discharge from the index stroke hospitalisation and categorised into single antiplatelet therapy (SAPT) and dual antiplatelet therapy (DAPT) groups. Primary outcome was composite events of stroke, myocardial infarction, and all-cause death at up to one year after the index stroke in an intention-to-treat analysis. Results: Of 4434 patients included in the analysis, 6.7% were treated with DAPT and 93.3% were in SAPT group. During the 1-year follow-up, composite events occurred in 5.7% of patients in DAPT group and in 12.3% of SAPT (p<0.001). The rates of individual events were lower in DAPT group compared to SAPT: recurrent stroke (3.4% versus 4.8%), myocardial infarction (0.7% versus 1.9%), and all-cause death (1.7% versus 6.0%). Bleeding occurred in 1.3% of the DAPT group versus 1.6% of the SAPT. Multivariable-adjusted Cox regression analysis showed that rates of composite outcome was lower in the DAPT group compared to SAPT (HR 0.53, 95%CI 0.32, 0.86). Conclusion: In patients with ischaemic stroke/TIA, treatment with DAPT following the index stroke was associated with reduced risk of the composite events of stroke, myocardial infarction, and death. There appears to be similar risk of bleeding with DAPT versus SAPT.


Sign in / Sign up

Export Citation Format

Share Document