Using nationwide ‘big data’ from linked electronic health records to help improve outcomes in cardiovascular diseases: 33 studies using methods from epidemiology, informatics, economics and social science in the ClinicAl disease research using LInked Bespoke studies and Electronic health Records (CALIBER) programme
Background: Electronic health records (EHRs), when linked across primary and secondary care and curated for research use, have the potential to improve our understanding of care quality and outcomes. Objective: To evaluate new opportunities arising from linked EHRs for improving quality of care and...
| Main Authors: | , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
NIHR Journals Library
2017-01-01
|
| Series: | Programme Grants for Applied Research |
| Subjects: | |
| Online Access: | https://doi.org/10.3310/pgfar05040 |
| _version_ | 1811332385345634304 |
|---|---|
| author | Harry Hemingway Gene S Feder Natalie K Fitzpatrick Spiros Denaxas Anoop D Shah Adam D Timmis |
| author_facet | Harry Hemingway Gene S Feder Natalie K Fitzpatrick Spiros Denaxas Anoop D Shah Adam D Timmis |
| author_sort | Harry Hemingway |
| collection | DOAJ |
| description | Background: Electronic health records (EHRs), when linked across primary and secondary care and curated for research use, have the potential to improve our understanding of care quality and outcomes. Objective: To evaluate new opportunities arising from linked EHRs for improving quality of care and outcomes for patients at risk of or with coronary disease across the patient journey. Design: Epidemiological cohort, health informatics, health economics and ethnographic approaches were used. Setting: 230 NHS hospitals and 226 general practices in England and Wales. Participants: Up to 2 million initially healthy adults, 100,000 people with stable coronary artery disease (SCAD) and up to 300,000 patients with acute coronary syndrome. Main outcome measures: Quality of care, fatal and non-fatal cardiovascular disease (CVD) events. Data platform and methods: We created a novel research platform [ClinicAl disease research using LInked Bespoke studies and Electronic health Records (CALIBER)] based on linkage of four major sources of EHR data in primary care and national registries. We carried out 33 complementary studies within the CALIBER framework. We developed a web-based clinical decision support system (CDSS) in hospital chest pain clinics. We established a novel consented prognostic clinical cohort of SCAD patients. Results: CALIBER was successfully established as a valid research platform based on linked EHR data in nearly 2 million adults with > 600 EHR phenotypes implemented on the web portal (see https://caliberresearch.org/portal). Despite national guidance, key opportunities for investigation and treatment were missed across the patient journey, resulting in a worse prognosis for patients in the UK compared with patients in health systems in other countries. Our novel, contemporary, high-resolution studies showed heterogeneous associations for CVD risk factors across CVDs. The CDSS did not alter the decision-making behaviour of clinicians in chest pain clinics. Prognostic models using real-world data validly discriminated risk of death and events, and were used in cost-effectiveness decision models. Conclusions: Emerging ‘big data’ opportunities arising from the linkage of records at different stages of a patient’s journey are vital to the generation of actionable insights into the diagnosis, risk stratification and cost-effective treatment of people at risk of, or with, CVD. Future work: The vast majority of NHS data remain inaccessible to research and this hampers efforts to improve efficiency and quality of care and to drive innovation. We propose three priority directions for further research. First, there is an urgent need to ‘unlock’ more detailed data within hospitals for the scale of the UK’s 65 million population. Second, there is a need for scaled approaches to using EHRs to design and carry out trials, and interpret the implementation of trial results. Third, large-scale, disease agnostic genetic and biological collections linked to such EHRs are required in order to deliver precision medicine and to innovate discovery. Study registration: CALIBER studies are registered as follows: study 2 – NCT01569139, study 4 – NCT02176174 and NCT01164371, study 5 – NCT01163513, studies 6 and 7 – NCT01804439, study 8 – NCT02285322, and studies 26–29 – NCT01162187. Optimising the Management of Angina is registered as Current Controlled Trials ISRCTN54381840. Funding: The National Institute for Health Research (NIHR) Programme Grants for Applied Research programme (RP-PG-0407-10314) (all 33 studies) and additional funding from the Wellcome Trust (study 1), Medical Research Council Partnership grant (study 3), Servier (study 16), NIHR Research Methods Fellowship funding (study 19) and NIHR Research for Patient Benefit (study 33). |
| first_indexed | 2024-04-13T16:35:58Z |
| format | Article |
| id | doaj.art-48dda2de3d4a4d328ace141c38833e9f |
| institution | Directory Open Access Journal |
| issn | 2050-4322 2050-4330 |
| language | English |
| last_indexed | 2024-04-13T16:35:58Z |
| publishDate | 2017-01-01 |
| publisher | NIHR Journals Library |
| record_format | Article |
| series | Programme Grants for Applied Research |
| spelling | doaj.art-48dda2de3d4a4d328ace141c38833e9f2022-12-22T02:39:26ZengNIHR Journals LibraryProgramme Grants for Applied Research2050-43222050-43302017-01-015410.3310/pgfar05040RP-PG-0407-10314Using nationwide ‘big data’ from linked electronic health records to help improve outcomes in cardiovascular diseases: 33 studies using methods from epidemiology, informatics, economics and social science in the ClinicAl disease research using LInked Bespoke studies and Electronic health Records (CALIBER) programmeHarry Hemingway0Gene S Feder1Natalie K Fitzpatrick2Spiros Denaxas3Anoop D Shah4Adam D Timmis5Institute of Health Informatics, University College London, London, UKCentre for Academic Primary Care, School of Social and Community Medicine, University of Bristol, Bristol, UKInstitute of Health Informatics, University College London, London, UKInstitute of Health Informatics, University College London, London, UKInstitute of Health Informatics, University College London, London, UKFarr Institute of Health Informatics Research, University College London, London, UKBackground: Electronic health records (EHRs), when linked across primary and secondary care and curated for research use, have the potential to improve our understanding of care quality and outcomes. Objective: To evaluate new opportunities arising from linked EHRs for improving quality of care and outcomes for patients at risk of or with coronary disease across the patient journey. Design: Epidemiological cohort, health informatics, health economics and ethnographic approaches were used. Setting: 230 NHS hospitals and 226 general practices in England and Wales. Participants: Up to 2 million initially healthy adults, 100,000 people with stable coronary artery disease (SCAD) and up to 300,000 patients with acute coronary syndrome. Main outcome measures: Quality of care, fatal and non-fatal cardiovascular disease (CVD) events. Data platform and methods: We created a novel research platform [ClinicAl disease research using LInked Bespoke studies and Electronic health Records (CALIBER)] based on linkage of four major sources of EHR data in primary care and national registries. We carried out 33 complementary studies within the CALIBER framework. We developed a web-based clinical decision support system (CDSS) in hospital chest pain clinics. We established a novel consented prognostic clinical cohort of SCAD patients. Results: CALIBER was successfully established as a valid research platform based on linked EHR data in nearly 2 million adults with > 600 EHR phenotypes implemented on the web portal (see https://caliberresearch.org/portal). Despite national guidance, key opportunities for investigation and treatment were missed across the patient journey, resulting in a worse prognosis for patients in the UK compared with patients in health systems in other countries. Our novel, contemporary, high-resolution studies showed heterogeneous associations for CVD risk factors across CVDs. The CDSS did not alter the decision-making behaviour of clinicians in chest pain clinics. Prognostic models using real-world data validly discriminated risk of death and events, and were used in cost-effectiveness decision models. Conclusions: Emerging ‘big data’ opportunities arising from the linkage of records at different stages of a patient’s journey are vital to the generation of actionable insights into the diagnosis, risk stratification and cost-effective treatment of people at risk of, or with, CVD. Future work: The vast majority of NHS data remain inaccessible to research and this hampers efforts to improve efficiency and quality of care and to drive innovation. We propose three priority directions for further research. First, there is an urgent need to ‘unlock’ more detailed data within hospitals for the scale of the UK’s 65 million population. Second, there is a need for scaled approaches to using EHRs to design and carry out trials, and interpret the implementation of trial results. Third, large-scale, disease agnostic genetic and biological collections linked to such EHRs are required in order to deliver precision medicine and to innovate discovery. Study registration: CALIBER studies are registered as follows: study 2 – NCT01569139, study 4 – NCT02176174 and NCT01164371, study 5 – NCT01163513, studies 6 and 7 – NCT01804439, study 8 – NCT02285322, and studies 26–29 – NCT01162187. Optimising the Management of Angina is registered as Current Controlled Trials ISRCTN54381840. Funding: The National Institute for Health Research (NIHR) Programme Grants for Applied Research programme (RP-PG-0407-10314) (all 33 studies) and additional funding from the Wellcome Trust (study 1), Medical Research Council Partnership grant (study 3), Servier (study 16), NIHR Research Methods Fellowship funding (study 19) and NIHR Research for Patient Benefit (study 33).https://doi.org/10.3310/pgfar05040big datacardiovascular diseasesclinical cohortelectronic health recordshospital variationinequalitiesprognosisquality of carerisk prediction |
| spellingShingle | Harry Hemingway Gene S Feder Natalie K Fitzpatrick Spiros Denaxas Anoop D Shah Adam D Timmis Using nationwide ‘big data’ from linked electronic health records to help improve outcomes in cardiovascular diseases: 33 studies using methods from epidemiology, informatics, economics and social science in the ClinicAl disease research using LInked Bespoke studies and Electronic health Records (CALIBER) programme Programme Grants for Applied Research big data cardiovascular diseases clinical cohort electronic health records hospital variation inequalities prognosis quality of care risk prediction |
| title | Using nationwide ‘big data’ from linked electronic health records to help improve outcomes in cardiovascular diseases: 33 studies using methods from epidemiology, informatics, economics and social science in the ClinicAl disease research using LInked Bespoke studies and Electronic health Records (CALIBER) programme |
| title_full | Using nationwide ‘big data’ from linked electronic health records to help improve outcomes in cardiovascular diseases: 33 studies using methods from epidemiology, informatics, economics and social science in the ClinicAl disease research using LInked Bespoke studies and Electronic health Records (CALIBER) programme |
| title_fullStr | Using nationwide ‘big data’ from linked electronic health records to help improve outcomes in cardiovascular diseases: 33 studies using methods from epidemiology, informatics, economics and social science in the ClinicAl disease research using LInked Bespoke studies and Electronic health Records (CALIBER) programme |
| title_full_unstemmed | Using nationwide ‘big data’ from linked electronic health records to help improve outcomes in cardiovascular diseases: 33 studies using methods from epidemiology, informatics, economics and social science in the ClinicAl disease research using LInked Bespoke studies and Electronic health Records (CALIBER) programme |
| title_short | Using nationwide ‘big data’ from linked electronic health records to help improve outcomes in cardiovascular diseases: 33 studies using methods from epidemiology, informatics, economics and social science in the ClinicAl disease research using LInked Bespoke studies and Electronic health Records (CALIBER) programme |
| title_sort | using nationwide big data from linked electronic health records to help improve outcomes in cardiovascular diseases 33 studies using methods from epidemiology informatics economics and social science in the clinical disease research using linked bespoke studies and electronic health records caliber programme |
| topic | big data cardiovascular diseases clinical cohort electronic health records hospital variation inequalities prognosis quality of care risk prediction |
| url | https://doi.org/10.3310/pgfar05040 |
| work_keys_str_mv | AT harryhemingway usingnationwidebigdatafromlinkedelectronichealthrecordstohelpimproveoutcomesincardiovasculardiseases33studiesusingmethodsfromepidemiologyinformaticseconomicsandsocialscienceintheclinicaldiseaseresearchusinglinkedbespokestudiesandelectronichealthrecordscal AT genesfeder usingnationwidebigdatafromlinkedelectronichealthrecordstohelpimproveoutcomesincardiovasculardiseases33studiesusingmethodsfromepidemiologyinformaticseconomicsandsocialscienceintheclinicaldiseaseresearchusinglinkedbespokestudiesandelectronichealthrecordscal AT nataliekfitzpatrick usingnationwidebigdatafromlinkedelectronichealthrecordstohelpimproveoutcomesincardiovasculardiseases33studiesusingmethodsfromepidemiologyinformaticseconomicsandsocialscienceintheclinicaldiseaseresearchusinglinkedbespokestudiesandelectronichealthrecordscal AT spirosdenaxas usingnationwidebigdatafromlinkedelectronichealthrecordstohelpimproveoutcomesincardiovasculardiseases33studiesusingmethodsfromepidemiologyinformaticseconomicsandsocialscienceintheclinicaldiseaseresearchusinglinkedbespokestudiesandelectronichealthrecordscal AT anoopdshah usingnationwidebigdatafromlinkedelectronichealthrecordstohelpimproveoutcomesincardiovasculardiseases33studiesusingmethodsfromepidemiologyinformaticseconomicsandsocialscienceintheclinicaldiseaseresearchusinglinkedbespokestudiesandelectronichealthrecordscal AT adamdtimmis usingnationwidebigdatafromlinkedelectronichealthrecordstohelpimproveoutcomesincardiovasculardiseases33studiesusingmethodsfromepidemiologyinformaticseconomicsandsocialscienceintheclinicaldiseaseresearchusinglinkedbespokestudiesandelectronichealthrecordscal |