Slow and costly access to anonymised patient data impedes academic research

Filippon, Jonathan

doi:10.1136/bmj.h5087

Cited by 9 publications

(8 citation statements)

References 1 publication

Supporting

Mentioning

Contrasting

Order By: Relevance

“…It has been suggested that NHSD, which performed the linkage to HES for our study, was overwhelmed with data linkage applications. 24 This may limit the usefulness of administrative data in trials with funder-imposed deadlines for completion.…”

Section: Discussionmentioning

confidence: 99%

Feasibility of data linkage in the PARAMEDIC trial: a cluster randomised trial of mechanical chest compression in out-of-hospital cardiac arrest

Quinn

Gavalova

et al. 2018

BMJ Open

View full text Add to dashboard Cite

Objectives There is considerable interest in reducing the cost of clinical trials. Linkage of trial data to administrative datasets and disease-specific registries may improve trial efficiency, but it has not been reported in resuscitation trials conducted in the UK. To assess the feasibility of using national administrative and clinical datasets to follow up patients transported to hospital following attempted resuscitation in a cluster randomised trial of a mechanical chest compression device in out-of-hospital cardiac arrest. Methods Hospital data on trial participants were requested from Hospital Episode Statistics (HES), the Intensive Care National Audit and Research Centre, and Myocardial Ischaemia National Audit Project and National Audit of Percutaneous Coronary Interventions, using unique patient identifiers. Linked data were received between June 2014 and June 2015. Results Of 4471 patients randomised in the pre-hospital randomised assessment of a mechanical compression device in cardiac arrest (PARAMEDIC) trial, 2398 (53.6%) were not known to be deceased at emergency department arrival and were eligible for linkage. We achieved an overall match rate of 86.7% in the combined HES accident and emergency, inpatient and critical care dataset, with variable match rates (4.2%–80.4%) in individual datasets. Patient demographics, cardiac arrest-related characteristics and major outcomes were predominantly similar between HES matched and unmatched groups, in the linkage apart from location, response time and return of spontaneous circulation (ROSC) at handover. Conclusions This study shows that it is feasible to track patients from the prehospital setting through to hospital admission using routinely available administrative datasets with a moderate to high degree of success. This approach has the potential to complement the trial data with the demographic and clinical management information about the studied cohort, as well as to improve the efficiency and reduce the costs of follow-up in cardiac arrest trials. Clinical trial registration NCT08233942Post-results.

show abstract

Section: Discussionmentioning

confidence: 99%

Feasibility of data linkage in the PARAMEDIC trial: a cluster randomised trial of mechanical chest compression in out-of-hospital cardiac arrest

Quinn

Gavalova

et al. 2018

BMJ Open

View full text Add to dashboard Cite

show abstract

“…We identified several publications which aimed to provide a firsthand description of specific data sharing experiences [16,23,143,[195][196][197]. For example, Savage and Vickers obtained only one of 10 requested studies and established contact with only five of 10 corresponding authors [196].…”

Section: Relation To Other Studiesmentioning

confidence: 99%

“…Barriers to accessing data were similar to those we describe here and included difficulties establishing contact with study authors, denial of requests for raw datasets because of ongoing analysis or because of a lack of time and personnel to properly prepare data. Geifman et al and Filippon et al reported costly and repeated data sharing requests [143,197]. Nevitt et al performed a systematic review of IPDMAs published between 1987 and 2015, and reported that only 25% of published IPDMAs had access to all identified IPD and no improvement in data retrieval rate over time [16].…”

Section: Relation To Other Studiesmentioning

confidence: 99%

Obtaining and managing data sets for individual participant data meta-analysis: scoping review and practical guide

Ventresca

Schünemann

Macbeth

et al. 2020

BMC Med Res Methodol

View full text Add to dashboard Cite

Background: Shifts in data sharing policy have increased researchers' access to individual participant data (IPD) from clinical studies. Simultaneously the number of IPD meta-analyses (IPDMAs) is increasing. However, rates of data retrieval have not improved. Our goal was to describe the challenges of retrieving IPD for an IPDMA and provide practical guidance on obtaining and managing datasets based on a review of the literature and practical examples and observations. Methods: We systematically searched MEDLINE, Embase, and the Cochrane Library, until January 2019, to identify publications focused on strategies to obtain IPD. In addition, we searched pharmaceutical websites and contacted industry organizations for supplemental information pertaining to recent advances in industry policy and practice. Finally, we documented setbacks and solutions encountered while completing a comprehensive IPDMA and drew on previous experiences related to seeking and using IPD. Results: Our scoping review identified 16 articles directly relevant for the conduct of IPDMAs. We present short descriptions of these articles alongside overviews of IPD sharing policies and procedures of pharmaceutical companies which display certification of Principles for Responsible Clinical Trial Data Sharing via Pharmaceutical Research and Manufacturers of America or European Federation of Pharmaceutical Industries and Associations websites. Advances in data sharing policy and practice affected the way in which data is requested, obtained, stored and analyzed. For our IPDMA it took 6.5 years to collect and analyze relevant IPD and navigate additional administrative barriers. Delays in obtaining data were largely due to challenges in communication with study sponsors, frequent changes in data sharing policies of study sponsors, and the requirement for a diverse skillset related to research, administrative, statistical and legal issues.

show abstract

“…Access to data through NHS Digital has been perceived as slow and costly, 40 with detailed attention to legal basis, information governance and fair processing. In our experience, many researchers opt to develop separate data-sharing agreements with providers outside of NHS Digital to avoid the DARS process.…”

Section: Nhs Digitalmentioning

confidence: 99%

Using primary care data for health research in England – an overview

Bradley

Carder²

2018

Future Healthcare Journal

View full text Add to dashboard Cite

In contrast to secondary care, where handwritten records remain widespread, electronic patient records have long been a key feature of UK general practice. By 1996, 96% of general practices were computerised and now almost every primary care consultation in the UK is recorded on a computerised clinical system. Consequently, we now have a vast repository of patient health data that spans decades, which could be used to address a range of important research questions. Unfortunately, accessing primary care data for health researchers can be a burdensome, confusing and time-consuming process. Understanding the way in which primary care data are recorded and 'coded' is not intuitive to those unfamiliar with general practice. The requirements of information governance mean that some data, or data presented in particular ways, are not available at all. This review provides a practical overview of the types of data recorded in primary care, the bodies responsible for them and how they can be accessed.

show abstract

Slow and costly access to anonymised patient data impedes academic research

Abstract: Getting data from the Health and Social Care Information Centre in England is time consuming and expensive—and Jonathan Filippon is still waiting

Cited by 9 publications

References 1 publication

Feasibility of data linkage in the PARAMEDIC trial: a cluster randomised trial of mechanical chest compression in out-of-hospital cardiac arrest

Feasibility of data linkage in the PARAMEDIC trial: a cluster randomised trial of mechanical chest compression in out-of-hospital cardiac arrest

Obtaining and managing data sets for individual participant data meta-analysis: scoping review and practical guide

Using primary care data for health research in England – an overview

Contact Info

Product

Resources

About