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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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Autores principales: 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, 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
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group Ltd. 2021
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.
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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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