Using routine primary care data in research: (in)efficient case studies and perspectives from the Asthma UK Centre for Applied Research
Aim We aimed to identify enablers and barriers of using primary care routine data for healthcare research, to formulate recommendations for improving efficiency in knowledge discovery.Background Data recorded routinely in primary care can be used for estimating the impact of interventions provided w...
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| Format: | Article |
| Language: | English |
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BMJ Publishing Group
2025-02-01
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| Series: | BMJ Health & Care Informatics |
| Online Access: | https://informatics.bmj.com/content/32/1/e101134.full |
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| author | David Price Jennifer K Quint Andrew Wilson Hilary Pinnock Andrew Bush Amy Hai Yan Chan Holly Tibble Steve Cunningham Stephen Turner Kay Wang Luke Daines Mome Mukherjee Gwyneth A Davies Steven Julious Tracy Jackson Deepa Varghese Rami A Alyami Noelle Morgan |
| author_facet | David Price Jennifer K Quint Andrew Wilson Hilary Pinnock Andrew Bush Amy Hai Yan Chan Holly Tibble Steve Cunningham Stephen Turner Kay Wang Luke Daines Mome Mukherjee Gwyneth A Davies Steven Julious Tracy Jackson Deepa Varghese Rami A Alyami Noelle Morgan |
| author_sort | David Price |
| collection | DOAJ |
| description | Aim We aimed to identify enablers and barriers of using primary care routine data for healthcare research, to formulate recommendations for improving efficiency in knowledge discovery.Background Data recorded routinely in primary care can be used for estimating the impact of interventions provided within routine care for all people who are clinically eligible. Despite official promotion of ‘efficient trial designs’, anecdotally researchers in the Asthma UK Centre for Applied Research (AUKCAR) have encountered multiple barriers to accessing and using routine data.Methods Using studies within the AUKCAR portfolio as exemplars, we captured limitations, barriers, successes, and strengths through correspondence and discussions with the principal investigators and project managers of the case studies.Results We identified 14 studies (8 trials, 2 developmental studies and 4 observational studies). Investigators agreed that using routine primary care data potentially offered a convenient collection of data for effectiveness outcomes, health economic assessment and process evaluation in one data extraction. However, this advantage was overshadowed by time-consuming processes that were major barriers to conducting efficient research. Common themes were multiple layers of information governance approvals in addition to the ethics and local governance approvals required by all health service research; lack of standardisation so that local approvals required diverse paperwork and reached conflicting conclusions as to whether a study should be approved. Practical consequences included a trial that over-recruited by 20% in order to randomise 144 practices with all required permissions, and a 5-year delay in reporting a trial while retrospectively applied regulations were satisfied to allow data linkage.Conclusions Overcoming the substantial barriers of using routine primary care data will require a streamlined governance process, standardised understanding/application of regulations and adequate National Health Service IT (Information Technology) capability. Without policy-driven prioritisation of these changes, the potential of this valuable resource will not be leveraged. |
| format | Article |
| id | doaj-art-e302a6e5e4f84e22aa5d1de59776788f |
| institution | Kabale University |
| issn | 2632-1009 |
| language | English |
| publishDate | 2025-02-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Health & Care Informatics |
| spelling | doaj-art-e302a6e5e4f84e22aa5d1de59776788f2025-08-20T03:42:02ZengBMJ Publishing GroupBMJ Health & Care Informatics2632-10092025-02-0132110.1136/bmjhci-2024-101134Using routine primary care data in research: (in)efficient case studies and perspectives from the Asthma UK Centre for Applied ResearchDavid Price0Jennifer K Quint1Andrew Wilson2Hilary Pinnock3Andrew Bush4Amy Hai Yan Chan5Holly Tibble6Steve Cunningham7Stephen Turner8Kay Wang9Luke Daines10Mome Mukherjee11Gwyneth A Davies12Steven Julious13Tracy Jackson14Deepa Varghese15Rami A Alyami16Noelle Morgan179 University of Aberdeen, Aberdeen, UK5 Imperial College London, London, UK12 University of East Anglia, Norwich, UK18 College of Medicine and Veterinary Medic, The University of Edinburgh Usher Institute of Population Health Sciences and Informatics, Edinburgh, UK4 National Heart and Lung Institute, London, UK15 The University of Auckland, Auckland, New Zealand1 The University of Edinburgh Usher Institute of Population Health Sciences and Informatics, Edinburgh, UKAsthma UK Centre for Applied Research, Edinburgh, Edinburgh, UK10 Child Health, University of Aberdeen, Aberdeen, UKprofessorUsher Institute, The University of Edinburgh, Edinburgh, UK14 The University of Edinburgh, Edinburgh, UK13 Swansea University Medical School, Swansea, UK7 University of Sheffield, Sheffield, UK14 The University of Edinburgh, Edinburgh, UK14 The University of Edinburgh, Edinburgh, UKRespiratory Therapy Program, Jazan University College of Nursing and Health Sciences, Jazan, Saudi Arabia16 Patient Contributor, Edinburgh, UKAim We aimed to identify enablers and barriers of using primary care routine data for healthcare research, to formulate recommendations for improving efficiency in knowledge discovery.Background Data recorded routinely in primary care can be used for estimating the impact of interventions provided within routine care for all people who are clinically eligible. Despite official promotion of ‘efficient trial designs’, anecdotally researchers in the Asthma UK Centre for Applied Research (AUKCAR) have encountered multiple barriers to accessing and using routine data.Methods Using studies within the AUKCAR portfolio as exemplars, we captured limitations, barriers, successes, and strengths through correspondence and discussions with the principal investigators and project managers of the case studies.Results We identified 14 studies (8 trials, 2 developmental studies and 4 observational studies). Investigators agreed that using routine primary care data potentially offered a convenient collection of data for effectiveness outcomes, health economic assessment and process evaluation in one data extraction. However, this advantage was overshadowed by time-consuming processes that were major barriers to conducting efficient research. Common themes were multiple layers of information governance approvals in addition to the ethics and local governance approvals required by all health service research; lack of standardisation so that local approvals required diverse paperwork and reached conflicting conclusions as to whether a study should be approved. Practical consequences included a trial that over-recruited by 20% in order to randomise 144 practices with all required permissions, and a 5-year delay in reporting a trial while retrospectively applied regulations were satisfied to allow data linkage.Conclusions Overcoming the substantial barriers of using routine primary care data will require a streamlined governance process, standardised understanding/application of regulations and adequate National Health Service IT (Information Technology) capability. Without policy-driven prioritisation of these changes, the potential of this valuable resource will not be leveraged.https://informatics.bmj.com/content/32/1/e101134.full |
| spellingShingle | David Price Jennifer K Quint Andrew Wilson Hilary Pinnock Andrew Bush Amy Hai Yan Chan Holly Tibble Steve Cunningham Stephen Turner Kay Wang Luke Daines Mome Mukherjee Gwyneth A Davies Steven Julious Tracy Jackson Deepa Varghese Rami A Alyami Noelle Morgan Using routine primary care data in research: (in)efficient case studies and perspectives from the Asthma UK Centre for Applied Research BMJ Health & Care Informatics |
| title | Using routine primary care data in research: (in)efficient case studies and perspectives from the Asthma UK Centre for Applied Research |
| title_full | Using routine primary care data in research: (in)efficient case studies and perspectives from the Asthma UK Centre for Applied Research |
| title_fullStr | Using routine primary care data in research: (in)efficient case studies and perspectives from the Asthma UK Centre for Applied Research |
| title_full_unstemmed | Using routine primary care data in research: (in)efficient case studies and perspectives from the Asthma UK Centre for Applied Research |
| title_short | Using routine primary care data in research: (in)efficient case studies and perspectives from the Asthma UK Centre for Applied Research |
| title_sort | using routine primary care data in research in efficient case studies and perspectives from the asthma uk centre for applied research |
| url | https://informatics.bmj.com/content/32/1/e101134.full |
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