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Linked electronic health records for research on a nationwide cohort of more than 54 million people in England: data resource
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 natio...
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BMJ Publishing Group Ltd.
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8413899/ https://www.ncbi.nlm.nih.gov/pubmed/33827854 http://dx.doi.org/10.1136/bmj.n826 |
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author | Wood, Angela Denholm, Rachel Hollings, Sam Cooper, Jennifer Ip, Samantha Walker, Venexia Denaxas, Spiros Akbari, Ashley Banerjee, Amitava Whiteley, William Lai, Alvina Sterne, Jonathan Sudlow, Cathie Douiri, Abdel Akinoso-Imran, Abdul Qadr Jonas, Adrian Shah, Ajay Handy, Alex Davies, Alun Kurdi, Amanj Hansell, Anna Docherty, Annemarie Pherwani, Arun Dashtban, Ashkan Bray, Ben Cairns, Ben Goldacre, Ben Humberstone, Ben Mateen, Bilal Doble, Brett Roberts, Brian Morris, Carole Dale, Caroline Rogers, Caroline Wolfe, Charles Tomlinson, Christopher Lawson, Claire du Toit, Clea Berry, Colin Smith, Craig O’Connell, Dan Harris, Daniel Brind, David Cromwell, David Hughes, David Martos, David Moreno Ringham, Debbie Lawler, Deborah Lowe, Deborah Nikiphorou, Elena Withnell, Eloise Di Angelantonio, Emanuele Morris, Eva Birney, Ewan Falck, Fabian Torabi, Fatemeh Greaves, Felix Falter, Florian Zaccardi, Francesco Kee, Frank Davies, Gareth Nicholson, George Curry, Gwenetta Zhang, Haoting Hemingway, Harry Wilde, Harry Abbasizanjani, Hoda Wu, Honghan Tang, Howard Wang, Huan Mordi, Ify MacArthur, Jackie Lyons, Jane Beveridge, Jennifer Barrett, Jessica Wu, Jianhua Thygesen, Johan Danesh, John Dennis, John Boyle, Jon Halcox, Julian Khunti, Kamlesh Cheema, Kate Brown, Katherine Li, Ken Kavanagh, Kim North, Laura Pasea, Laura Ellins, Libby Pierotti, Livia Wright, Lucy Martin, Lydia Morrice, Lynn Mamas, Mamas Bennie, Marion Barber, Mark Macleod, Mary Joan Caputo, Massimo Buch, Maya Mizani, Mehrdad Katsoulis, Michalis Gravenor, Mike Inouye, Mike Skrypak, Mirek Gerstung, Moritz Pirmohamed, Munir Glickman, Myer Herz, Naomi Davies, Neil Hall, Nick Samani, Nilesh Seminog, Olena Lorgelly, Paula Machado, Pedro Li, Qiuju Denholm, Rachel Goldacre, Raph Carragher, Raymond Sofat, Reecha Takhar, Rohan Lyons, Ronan Priedon, Rouven Griffiths, Rowena Payne, Rupert Kolamunnage-Dona, Ruwanthi Salim, Safa Padmanabhan, Sandosh Onida, Sarah Kent, Seamus Bacon, Seb Manohar, Sinduja Babu-Narayan, Sonya Keene, Spencer Varma, Susheel Lawrence, Thomas Wang, Tianxiao Wilkinson, Tim Norris, Tom Palmer, Tom Nafilyan, Vahé |
author_facet | Wood, Angela Denholm, Rachel Hollings, Sam Cooper, Jennifer Ip, Samantha Walker, Venexia Denaxas, Spiros Akbari, Ashley Banerjee, Amitava Whiteley, William Lai, Alvina Sterne, Jonathan Sudlow, Cathie Douiri, Abdel Akinoso-Imran, Abdul Qadr Jonas, Adrian Shah, Ajay Handy, Alex Davies, Alun Kurdi, Amanj Hansell, Anna Docherty, Annemarie Pherwani, Arun Dashtban, Ashkan Bray, Ben Cairns, Ben Goldacre, Ben Humberstone, Ben Mateen, Bilal Doble, Brett Roberts, Brian Morris, Carole Dale, Caroline Rogers, Caroline Wolfe, Charles Tomlinson, Christopher Lawson, Claire du Toit, Clea Berry, Colin Smith, Craig O’Connell, Dan Harris, Daniel Brind, David Cromwell, David Hughes, David Martos, David Moreno Ringham, Debbie Lawler, Deborah Lowe, Deborah Nikiphorou, Elena Withnell, Eloise Di Angelantonio, Emanuele Morris, Eva Birney, Ewan Falck, Fabian Torabi, Fatemeh Greaves, Felix Falter, Florian Zaccardi, Francesco Kee, Frank Davies, Gareth Nicholson, George Curry, Gwenetta Zhang, Haoting Hemingway, Harry Wilde, Harry Abbasizanjani, Hoda Wu, Honghan Tang, Howard Wang, Huan Mordi, Ify MacArthur, Jackie Lyons, Jane Beveridge, Jennifer Barrett, Jessica Wu, Jianhua Thygesen, Johan Danesh, John Dennis, John Boyle, Jon Halcox, Julian Khunti, Kamlesh Cheema, Kate Brown, Katherine Li, Ken Kavanagh, Kim North, Laura Pasea, Laura Ellins, Libby Pierotti, Livia Wright, Lucy Martin, Lydia Morrice, Lynn Mamas, Mamas Bennie, Marion Barber, Mark Macleod, Mary Joan Caputo, Massimo Buch, Maya Mizani, Mehrdad Katsoulis, Michalis Gravenor, Mike Inouye, Mike Skrypak, Mirek Gerstung, Moritz Pirmohamed, Munir Glickman, Myer Herz, Naomi Davies, Neil Hall, Nick Samani, Nilesh Seminog, Olena Lorgelly, Paula Machado, Pedro Li, Qiuju Denholm, Rachel Goldacre, Raph Carragher, Raymond Sofat, Reecha Takhar, Rohan Lyons, Ronan Priedon, Rouven Griffiths, Rowena Payne, Rupert Kolamunnage-Dona, Ruwanthi Salim, Safa Padmanabhan, Sandosh Onida, Sarah Kent, Seamus Bacon, Seb Manohar, Sinduja Babu-Narayan, Sonya Keene, Spencer Varma, Susheel Lawrence, Thomas Wang, Tianxiao Wilkinson, Tim Norris, Tom Palmer, Tom Nafilyan, Vahé |
author_sort | Wood, Angela |
collection | PubMed |
description | 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 OUTCOME MEASURES: 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. |
format | Online Article Text |
id | pubmed-8413899 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | BMJ Publishing Group Ltd. |
record_format | MEDLINE/PubMed |
spelling | pubmed-84138992021-10-05 Linked electronic health records for research on a nationwide cohort of more than 54 million people in England: data resource Wood, Angela Denholm, Rachel Hollings, Sam Cooper, Jennifer Ip, Samantha Walker, Venexia Denaxas, Spiros Akbari, Ashley Banerjee, Amitava Whiteley, William Lai, Alvina Sterne, Jonathan Sudlow, Cathie Douiri, Abdel Akinoso-Imran, Abdul Qadr Jonas, Adrian Shah, Ajay Handy, Alex Davies, Alun Kurdi, Amanj Hansell, Anna Docherty, Annemarie Pherwani, Arun Dashtban, Ashkan Bray, Ben Cairns, Ben Goldacre, Ben Humberstone, Ben Mateen, Bilal Doble, Brett Roberts, Brian Morris, Carole Dale, Caroline Rogers, Caroline Wolfe, Charles Tomlinson, Christopher Lawson, Claire du Toit, Clea Berry, Colin Smith, Craig O’Connell, Dan Harris, Daniel Brind, David Cromwell, David Hughes, David Martos, David Moreno Ringham, Debbie Lawler, Deborah Lowe, Deborah Nikiphorou, Elena Withnell, Eloise Di Angelantonio, Emanuele Morris, Eva Birney, Ewan Falck, Fabian Torabi, Fatemeh Greaves, Felix Falter, Florian Zaccardi, Francesco Kee, Frank Davies, Gareth Nicholson, George Curry, Gwenetta Zhang, Haoting Hemingway, Harry Wilde, Harry Abbasizanjani, Hoda Wu, Honghan Tang, Howard Wang, Huan Mordi, Ify MacArthur, Jackie Lyons, Jane Beveridge, Jennifer Barrett, Jessica Wu, Jianhua Thygesen, Johan Danesh, John Dennis, John Boyle, Jon Halcox, Julian Khunti, Kamlesh Cheema, Kate Brown, Katherine Li, Ken Kavanagh, Kim North, Laura Pasea, Laura Ellins, Libby Pierotti, Livia Wright, Lucy Martin, Lydia Morrice, Lynn Mamas, Mamas Bennie, Marion Barber, Mark Macleod, Mary Joan Caputo, Massimo Buch, Maya Mizani, Mehrdad Katsoulis, Michalis Gravenor, Mike Inouye, Mike Skrypak, Mirek Gerstung, Moritz Pirmohamed, Munir Glickman, Myer Herz, Naomi Davies, Neil Hall, Nick Samani, Nilesh Seminog, Olena Lorgelly, Paula Machado, Pedro Li, Qiuju Denholm, Rachel Goldacre, Raph Carragher, Raymond Sofat, Reecha Takhar, Rohan Lyons, Ronan Priedon, Rouven Griffiths, Rowena Payne, Rupert Kolamunnage-Dona, Ruwanthi Salim, Safa Padmanabhan, Sandosh Onida, Sarah Kent, Seamus Bacon, Seb Manohar, Sinduja Babu-Narayan, Sonya Keene, Spencer Varma, Susheel Lawrence, Thomas Wang, Tianxiao Wilkinson, Tim Norris, Tom Palmer, Tom Nafilyan, Vahé BMJ Research 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 OUTCOME MEASURES: 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. BMJ Publishing Group Ltd. 2021-04-07 /pmc/articles/PMC8413899/ /pubmed/33827854 http://dx.doi.org/10.1136/bmj.n826 Text en © Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY. No commercial re-use. See rights and permissions. Published by BMJ. https://creativecommons.org/licenses/by/4.0/This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . |
spellingShingle | Research Wood, Angela Denholm, Rachel Hollings, Sam Cooper, Jennifer Ip, Samantha Walker, Venexia Denaxas, Spiros Akbari, Ashley Banerjee, Amitava Whiteley, William Lai, Alvina Sterne, Jonathan Sudlow, Cathie Douiri, Abdel Akinoso-Imran, Abdul Qadr Jonas, Adrian Shah, Ajay Handy, Alex Davies, Alun Kurdi, Amanj Hansell, Anna Docherty, Annemarie Pherwani, Arun Dashtban, Ashkan Bray, Ben Cairns, Ben Goldacre, Ben Humberstone, Ben Mateen, Bilal Doble, Brett Roberts, Brian Morris, Carole Dale, Caroline Rogers, Caroline Wolfe, Charles Tomlinson, Christopher Lawson, Claire du Toit, Clea Berry, Colin Smith, Craig O’Connell, Dan Harris, Daniel Brind, David Cromwell, David Hughes, David Martos, David Moreno Ringham, Debbie Lawler, Deborah Lowe, Deborah Nikiphorou, Elena Withnell, Eloise Di Angelantonio, Emanuele Morris, Eva Birney, Ewan Falck, Fabian Torabi, Fatemeh Greaves, Felix Falter, Florian Zaccardi, Francesco Kee, Frank Davies, Gareth Nicholson, George Curry, Gwenetta Zhang, Haoting Hemingway, Harry Wilde, Harry Abbasizanjani, Hoda Wu, Honghan Tang, Howard Wang, Huan Mordi, Ify MacArthur, Jackie Lyons, Jane Beveridge, Jennifer Barrett, Jessica Wu, Jianhua Thygesen, Johan Danesh, John Dennis, John Boyle, Jon Halcox, Julian Khunti, Kamlesh Cheema, Kate Brown, Katherine Li, Ken Kavanagh, Kim North, Laura Pasea, Laura Ellins, Libby Pierotti, Livia Wright, Lucy Martin, Lydia Morrice, Lynn Mamas, Mamas Bennie, Marion Barber, Mark Macleod, Mary Joan Caputo, Massimo Buch, Maya Mizani, Mehrdad Katsoulis, Michalis Gravenor, Mike Inouye, Mike Skrypak, Mirek Gerstung, Moritz Pirmohamed, Munir Glickman, Myer Herz, Naomi Davies, Neil Hall, Nick Samani, Nilesh Seminog, Olena Lorgelly, Paula Machado, Pedro Li, Qiuju Denholm, Rachel Goldacre, Raph Carragher, Raymond Sofat, Reecha Takhar, Rohan Lyons, Ronan Priedon, Rouven Griffiths, Rowena Payne, Rupert Kolamunnage-Dona, Ruwanthi Salim, Safa Padmanabhan, Sandosh Onida, Sarah Kent, Seamus Bacon, Seb Manohar, Sinduja Babu-Narayan, Sonya Keene, Spencer Varma, Susheel Lawrence, Thomas Wang, Tianxiao Wilkinson, Tim Norris, Tom Palmer, Tom Nafilyan, Vahé Linked electronic health records for research on a nationwide cohort of more than 54 million people in England: data resource |
title | Linked electronic health records for research on a nationwide cohort of more than 54 million people in England: data resource |
title_full | Linked electronic health records for research on a nationwide cohort of more than 54 million people in England: data resource |
title_fullStr | Linked electronic health records for research on a nationwide cohort of more than 54 million people in England: data resource |
title_full_unstemmed | Linked electronic health records for research on a nationwide cohort of more than 54 million people in England: data resource |
title_short | Linked electronic health records for research on a nationwide cohort of more than 54 million people in England: data resource |
title_sort | linked electronic health records for research on a nationwide cohort of more than 54 million people in england: data resource |
topic | Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8413899/ https://www.ncbi.nlm.nih.gov/pubmed/33827854 http://dx.doi.org/10.1136/bmj.n826 |
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