scholarly journals Linking electronic health records for research on a nationwide cohort including over 54 million people in England

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.

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.


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.


2019 ◽  
Author(s):  
Suzan Hassan ◽  
Samira Heinkel ◽  
Alexandra Burton ◽  
Ruth Blackburn ◽  
Tayla McCloud ◽  
...  

Abstract Background: People with severe mental illness (SMI) are at greater risk of earlier mortality due to physical health problems including cardiovascular disease (CVD). There is limited work exploring whether physical health interventions for people with SMI can be embedded and/or adopted within specific healthcare settings. This information is necessary to optimise the development of services and interventions within healthcare settings. This study explores the barriers and facilitators of implementing a nurse-delivered intervention (‘PRIMROSE’) designed to reduce CVD risk in people with SMI in primary care, using Normalisation Process Theory (NPT).Methods: Semi-structured interviews were conducted between April-December 2016 with patients with SMI at risk of CVD who received the PRIMROSE intervention, and practice nurses and healthcare assistants who delivered it in primary care in England. Interviews were audio recorded, transcribed and analysed using thematic analysis. Emergent themes were then mapped on to constructs of NPT. Results: 15 patients and 15 staff participated. The implementation of PRIMROSE was affected by: 1) Coherence, where both staff and patients expressed an understanding of the purpose and value of the intervention, 2) Cognitive participation, including mental health stigma, staff confidence levels, staff knowledge and staff perceptions of the compatibility of the intervention to primary care contexts, 3) Collective action, including lack of patient engagement despite flexible appointment scheduling. Limited time and resources hindered implementation. Positive relationships between staff and patients facilitated implementation, and access to ‘in-house’ staff support was considered important. Staff skills, knowledge and training facilitated implementation. However, perceptions of the applicability of the intervention to real-world contexts and accessibility of resources sometimes prevented collective action. 4) Reflexive monitoring, where the staff commonly appraised the intervention by reporting its value and identifying ways of improving it. Conclusions: Future interventions for physical health in people with SMI could consider the following items to improve implementation: 1) training for practitioners covering interpersonal skills, mental and physical health, in order to overcome stigma, increase knowledge, confidence and facilitate positive relationships with patients and 2) enabling access to resources including specialist services, additional staff and time.


2020 ◽  
Author(s):  
Suzan Hassan ◽  
Samira Heinkel ◽  
Alexandra Burton ◽  
Ruth Blackburn ◽  
Tayla McCloud ◽  
...  

Abstract Background: People with severe mental illness (SMI) are at greater risk of earlier mortality due to physical health problems including cardiovascular disease (CVD). There is limited work exploring whether physical health interventions for people with SMI can be embedded and/or adopted within specific healthcare settings. This information is necessary to optimise the development of services and interventions within healthcare settings. This study explores the barriers and facilitators of implementing a nurse-delivered intervention (‘PRIMROSE’) designed to reduce CVD risk in people with SMI in primary care, using Normalisation Process Theory (NPT), a theory that explains the dynamics of embedding or ‘normalising’ a complex intervention within healthcare settings .Methods: Semi-structured interviews were conducted between April-December 2016 with patients with SMI at risk of CVD who received the PRIMROSE intervention, and practice nurses and healthcare assistants who delivered it in primary care in England. Interviews were audio recorded, transcribed and analysed using thematic analysis. Emergent themes were then mapped on to constructs of NPT.Results: 15 patients and 15 staff participated. The implementation of PRIMROSE was affected by the following as categorised by the NPT domains: 1) Coherence, where both staff and patients expressed an understanding of the purpose and value of the intervention, 2) Cognitive participation, including mental health stigma and staff perceptions of the compatibility of the intervention to primary care contexts, 3) Collective action, including 3.1. interactional workability in terms of lack of patient engagement despite flexible appointment scheduling. The structured nature of the intervention and the need for additional nurse time were considered barriers, 3.2. Relational integration i.e. whereby positive relationships between staff and patients facilitated implementation, and access to ‘in-house’ staff support was considered important, 3.3. Skill-set workability in terms of staff skills, knowledge and training facilitated implementation, 3.4. Contextual integration regarding the accessibility of resources sometimes prevented collective action. 4) Reflexive monitoring, where the staff commonly appraised the intervention by suggesting designated timeslots and technology may improve the intervention. Conclusions: Future interventions for physical health in people with SMI could consider the following items to improve implementation: 1) training for practitioners in CVD risk prevention to increase practitioners knowledge of physical interventions 2) training in severe mental illness to increase practitioner confidence to engage with people with SMI and reduce mental health stigma and 3) access to resources including specialist services, additional staff and time. Access to specialist behaviour change services may be beneficial for patients with specific health goals. Additional staff to support workload and share knowledge may also be valuable. More time for appointments with people with SMI may allow practitioners to better meet patient needs.


2020 ◽  
Author(s):  
Suzan Hassan ◽  
Samira Heinkel ◽  
Alexandra Burton ◽  
Ruth Blackburn ◽  
Tayla McCloud ◽  
...  

Abstract Background: People with severe mental illness (SMI) are at greater risk of earlier mortality due to physical health problems including cardiovascular disease (CVD). There is limited work exploring whether physical health interventions for people with SMI can be embedded and/or adopted within specific healthcare settings. This information is necessary to optimise the development of services and interventions within healthcare settings. This study explores the barriers and facilitators of implementing a nurse-delivered intervention (‘PRIMROSE’) designed to reduce CVD risk in people with SMI in primary care, using Normalisation Process Theory (NPT), a theory that explains the dynamics of embedding or ‘normalising’ a complex intervention within healthcare settings .Methods: Semi-structured interviews were conducted between April-December 2016 with patients with SMI at risk of CVD who received the PRIMROSE intervention, and practice nurses and healthcare assistants who delivered it in primary care in England. Interviews were audio recorded, transcribed and analysed using thematic analysis. Emergent themes were then mapped on to constructs of NPT.Results: 15 patients and 15 staff participated. The implementation of PRIMROSE was affected by the following as categorised by the NPT domains: 1) Coherence, where both staff and patients expressed an understanding of the purpose and value of the intervention, 2) Cognitive participation, including mental health stigma and staff perceptions of the compatibility of the intervention to primary care contexts, 3) Collective action, including 3.1. interactional workability in terms of lack of patient engagement despite flexible appointment scheduling. The structured nature of the intervention and the need for additional nurse time were considered barriers, 3.2. Relational integration i.e. whereby positive relationships between staff and patients facilitated implementation, and access to ‘in-house’ staff support was considered important, 3.3. Skill-set workability in terms of staff skills, knowledge and training facilitated implementation, 3.4. Contextual integration regarding the accessibility of resources sometimes prevented collective action. 4) Reflexive monitoring, where the staff commonly appraised the intervention by suggesting designated timeslots and technology may improve the intervention. Conclusions: Future interventions for physical health in people with SMI could consider the following items to improve implementation: 1) training for practitioners in CVD risk prevention to increase practitioners knowledge of physical interventions 2) training in severe mental illness to increase practitioner confidence to engage with people with SMI and reduce mental health stigma and 3) access to resources including specialist services, additional staff and time. Access to specialist behaviour change services may be beneficial for patients with specific health goals. Additional staff to support workload and share knowledge may also be valuable. More time for appointments with people with SMI may allow practitioners to better meet patient needs.


BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e036027
Author(s):  
Jessica Watson ◽  
Penny Whiting ◽  
Chris Salisbury ◽  
Jonathan Banks ◽  
Willie Hamilton

ObjectivesIdentification of patients at increased mortality risk is important in the context of increasing multimorbidity and an ageing population, to help facilitate the planning and delivery of services. The aim of this study was to examine 1-year all-cause mortality in a cohort of primary care patients in whom inflammatory markers including C reactive protein (CRP), erythrocyte sedimentation rate (ESR) and plasma viscosity (PV), had been tested.DesignObservational cohort study using general practitioner Electronic Health Records from the Clinical Practice Research Datalink, with linkage to Office for National Statistics (ONS) Death Registry.SettingUK Primary Care.Participants159 325 patients with inflammatory marker tests done in 2014 and 39 928 age, sex and practice-matched controls without inflammatory marker testing. ONS Death registry data were available for 109 966 participants.Primary and secondary outcome measuresOne-year mortality in those with raised inflammatory markers compared with normal inflammatory markers and untested controls. Subanalyses stratified 1-year mortality by age group, gender and cause of death.ResultsPatients with a raised inflammatory marker (n=47 797) had an overall 1-year all-cause mortality of 6.89%, compared with 1.41% in those with normal inflammatory markers (p<0.001) and 1.62% in untested controls. A raised CRP is associated with the highest mortality rate at 8.76% compared with 4.99% for ESR and 4.66% for PV. One-year mortality is higher in men with a raised inflammatory marker compared with women (9.78% vs 5.29%). The C-statistic of a simple mortality prediction model containing age, sex and CRP test result is 0.89.ConclusionsInflammatory markers are a strong predictor of all-cause mortality in primary care, with a C-statistic comparable to several previously developed frailty indices. Future research should consider the added value of CRP testing, in combination with other risk factors, to improve prediction of mortality in primary care. Evidence- based interventions for frailty are needed alongside predictive tools.


2020 ◽  
Author(s):  
Suzan Hassan ◽  
Samira Heinkel ◽  
Alexandra Burton ◽  
Ruth Blackburn ◽  
Tayla McCloud ◽  
...  

Abstract Background: People with severe mental illness (SMI) are at greater risk of earlier mortality due to physical health problems including cardiovascular disease (CVD). There is limited work exploring whether physical health interventions for people with SMI can be embedded and/or adopted within specific healthcare settings. This information is necessary to optimise the development of services and interventions within healthcare settings. This study explores the barriers and facilitators of implementing a nurse-delivered intervention (‘PRIMROSE’) designed to reduce CVD risk in people with SMI in primary care, using Normalisation Process Theory (NPT), a theory that explains the dynamics of embedding or ‘normalising’ a complex intervention within healthcare settings .Methods: Semi-structured interviews were conducted between April-December 2016 with patients with SMI at risk of CVD who received the PRIMROSE intervention, and practice nurses and healthcare assistants who delivered it in primary care in England. Interviews were audio recorded, transcribed and analysed using thematic analysis. Emergent themes were then mapped on to constructs of NPT.Results: 15 patients and 15 staff participated. The implementation of PRIMROSE was affected by the following as categorised by the NPT domains: 1) Coherence, where both staff and patients expressed an understanding of the purpose and value of the intervention, 2) Cognitive participation, including mental health stigma and staff perceptions of the compatibility of the intervention to primary care contexts, 3) Collective action, including 3.1. Interactional workability in terms of lack of patient engagement despite flexible appointment scheduling. The structured nature of the intervention and the need for additional nurse time were considered barriers, 3.2. Relational integration i.e. whereby positive relationships between staff and patients facilitated implementation, and access to ‘in-house’ staff support was considered important, 3.3. Skill-set workability in terms of staff skills, knowledge and training facilitated implementation, 3.4. Contextual integration regarding the accessibility of resources sometimes prevented collective action. 4) Reflexive monitoring, where the staff commonly appraised the intervention by suggesting designated timeslots and technology may improve the intervention. Conclusions: Future interventions for physical health in people with SMI could consider the following items to improve implementation: 1) training for practitioners in CVD risk prevention to increase practitioners knowledge of physical interventions 2) training in SMI to increase practitioner confidence to engage with people with SMI and reduce mental health stigma and 3) access to resources including specialist services, additional staff and time. Access to specialist behaviour change services may be beneficial for patients with specific health goals. Additional staff to support workload and share knowledge may also be valuable. More time for appointments with people with SMI may allow practitioners to better meet patient needs.


2020 ◽  
Author(s):  
Clare R Bankhead ◽  
Sarah Lay-Flurrie ◽  
Brian D Nicholson ◽  
James P Sheppard ◽  
Chris P Gale ◽  
...  

AbstractObjectiveTo quantify the impact and recovery in cardiovascular disease monitoring in primary care associated with the first COVID-19 lockdown.DesignRetrospective nationwide primary care cohort study, utilising data from 1st January 2018 to 27th September 2020.SettingWe extracted primary care electronic health records data from 514 primary care practices in England contributing to the Oxford Royal College of General Practitioners Clinical Informatics Digital Hub (ORCHID). These practices were representative of English primary care across urban and non-urban practices.ParticipantsThe ORCHID database included 6,157,327 active patients during the study period, and 13,938,390 patient years of observation (final date of follow-up 27th September 2020). The mean (SD) age was 38±24 years, 49.4% were male and the majority were of white ethnicity (65% [21.9% had unknown ethnicity])ExposureThe primary exposure was the first national lockdown in the UK, starting on 23rd March 2020.Main outcome measuresRecords of cholesterol, blood pressure, HbA1c and International Normalised Ratio (INR) measurement derived from coded entries in the primary care electronic health record.ResultsRates of cholesterol, blood pressure, HbA1c and INR recording dropped by 23-87% in the week following the first UK national lockdown, compared with the previous week. The largest decline was seen in cholesterol (IRR 0.13, 95% CI 0.11 to 0.15) and smallest for INR (IRR 0.77, 95% CI 0.72 to 0.81).Following the immediate drop, rates of recorded tests increased on average by 5-9% per week until 27th September 2020. However, the number of recorded measures remained below that expected for the time of year, reaching 51.8% (95% CI 51.8 to 51.9%) for blood pressure, 63.7%, (95% CI 63.7% to 63.8%) for cholesterol measurement and 70.3% (95% CI 70.2% to 70.4%) for HbA1c. Rates of INR recording declined throughout the previous two years, a trend that continued after lockdown. There were no differences in the times series trends based on sex, age, ethnicity or deprivation.ConclusionsCardiovascular disease monitoring in English primary care declined substantially from the time of the first UK lockdown. Despite a consistent recovery in activity, there is still a substantial shortfall in the numbers of recorded measurements to those expected. Strategies are required to ensure cardiovascular disease monitoring is maintained during the COVID-19 pandemic.


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