Engaging with the clinical data transparency initiative: a view from the National Institute for Cardiovascular Outcomes Research (NICOR)

Gale, Chris P; Weston, Clive; Denaxas, Spiros; Cunningham, David; Belder, Mark de; Gray, Huon; Boyle, Roger; Deanfield, John

doi:10.1136/heartjnl-2012-302469

Cited by 38 publications

(29 citation statements)

References 22 publications

(10 reference statements)

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“…Furthermore, as observed in previous longitudinal studies,6 the ability to demonstrate improved results with new techniques can be hindered by a trend to accept more complex lesions, sometimes resulting in worsening rather than improvement of the success rate over time. The mandatory publication of centres’ and operators’ results (as part of the freedom-to-access policy implemented for surgery and angioplasty in many countries including the USA and UK) has created more awareness of this problem,7 and adjustment methods have since been developed to correct outcome for patient and lesion selection. Therefore, the aim of this study was to analyse and compare CTO success rates with patient and lesion characteristics in a prospectively collected single-centre database of consecutive occlusions in the years 2003–2012.…”

Section: Introductionmentioning

confidence: 99%

Increase in J-CTO lesion complexity score explains the disparity between recanalisation success and evolution of chronic total occlusion strategies: insights from a single-centre 10-year experience

Syrseloudis

Secco

Barrero

et al. 2013

Heart

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Section: Introductionmentioning

confidence: 99%

Increase in J-CTO lesion complexity score explains the disparity between recanalisation success and evolution of chronic total occlusion strategies: insights from a single-centre 10-year experience

Syrseloudis

Secco

Barrero

et al. 2013

Heart

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“…In 2010, the Healthcare Quality Improvement Partnership handed responsibility for the six cardiovascular registries to the newly established National Institute for Cardiovascular Outcomes Research (NICOR), which now not only has responsibility for the annual audit reports but also makes the registry data available to research groups. 27 The overarching aim of CALIBER is to harness diverse data sources to undertake novel research in CVDs, including opportunities improving care. Our research programme adopted the 'patient journey' concept to explore missed opportunities in primary prevention, diagnosis, acute care and secondary prevention ( Figure 2).…”

Section: Electronic Health Records Data Opportunities In Coronary Dismentioning

confidence: 99%

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

Hemingway

Feder

Denaxas

et al. 2017

Programme Grants Appl Res

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BackgroundElectronic 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.ObjectiveTo 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.DesignEpidemiological cohort, health informatics, health economics and ethnographic approaches were used.Setting230 NHS hospitals and 226 general practices in England and Wales.ParticipantsUp 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 measuresQuality of care, fatal and non-fatal cardiovascular disease (CVD) events.Data platform and methodsWe 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.ResultsCALIBER 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 (seehttps://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.ConclusionsEmerging ‘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 workThe 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 registrationCALIBER 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.FundingThe 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).

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“…In parallel with this, clinical registries have become established as tools for auditing clinical standards, and designing and benchmarking quality improvement initiatives. As a result, there has been a growth in the number, size and quality of clinical registries, particularly in the field of cardiology -many of which are now national in their coverage [1][2][3][4]. This development, coupled with an appreciation of the relevance of real "world data", has resulted in a greater use of clinical registries for observational research.…”

Section: Introductionmentioning

confidence: 99%

Contemporary roles of registries in clinical cardiology: when do we need randomized trials?

Ieva

Gale

Sharples

2014

Expert Review of Cardiovascular Therapy

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Engaging with the clinical data transparency initiative: a view from the National Institute for Cardiovascular Outcomes Research (NICOR)

Cited by 38 publications

References 22 publications

Increase in J-CTO lesion complexity score explains the disparity between recanalisation success and evolution of chronic total occlusion strategies: insights from a single-centre 10-year experience

Increase in J-CTO lesion complexity score explains the disparity between recanalisation success and evolution of chronic total occlusion strategies: insights from a single-centre 10-year experience

Contemporary roles of registries in clinical cardiology: when do we need randomized trials?

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