Version: 0.0.4 | Published: 26 Jul 2023 | Updated: 666 days ago
Summary
DOI Name:
Not Available
Documentation
Description:
The Royal College of General Practitioners (RCGP) Research and Surveillance Centre (RSC) nationally representative general practice sentinel network and database
National primary care sentinel network:
The RCGP RSC is nationally representative a network of over 500 general practices (GP) providing pseudonymised data for weekly surveillance of infectious diseases; our data are also available for quality improvement, research and education. Research based on the RCGP RSC data have been published in the best journals including BMJ, Lancet and Diabetes Care.
Observational research
The disease surveillance program is commissioned by Public Health England (PHE) and covers 37 infectious diseases including influenza. The RCGP RSC is a nationally representative population. The RCGP RSC and PHE, and its predecessor organizations have an over 50-year history of collaboration in influenza and respiratory disease surveillance and vaccine effectiveness studies. Each practice in the network is reported on by all 37 infectious disease on a weekly basis and are graphically compared with the network as a whole (on their own web based dashboard); this drives both quality improvement in clinical care and also raises data quality, with our practice liaison team providing timely support to practices requiring help with any disparities in their information. Thus, the observational researcher benefits from a data warehouse of patient level records going back decades with consistently coded data, able to support both longitudinal and cross-sectional study designs.
Interventional research – ambition to be a hub for trials
The RCGP RSC has produced a ‘Weekly Return’ of infections and respiratory disease since 1967, though over time it has expanded in terms of size, scope, sample collection and its capability with linking with other datasets. The databases systems at the RCGP RSC can process large numbers of patients’ data rapidly. The typical duration for generating the weekly report is under 4 hours. The weekly report reached its highest denominator of 3 million patients in last week of October 2019.
The RCGP RSC hosts Workload Observatory (funded by NHS England) for GPs to understand trends of patients with multiple and more complex conditions. Using disease specific dashboards, general practices are provided weekly updated data quality indicators and comparison with other practices in the RCGP RSC network. This process allows practices to continuously improve their data quality and increase the quality of the RCGP RSC studies over time.
We regularly administer questionnaires in our studies and are experienced in collecting samples from our network of practices. Practice level support from our dedicated practice liaison team is enhanced by our suite of dashboard technologies delivering rapid feedback to each of our practices. Hence combing our expertise in real world data analysis, high frequency of practice support and our continual development of internet-based practice level interaction, we are well placed for providing a low cost pragmatic trials platform for quality improvement studies or as a medicinal trials platform.
Clinical concepts are ontologically defined for clinical concepts as part of developing a study protocol. We have clinical and programming expertise to assist researchers in developing new ontologies for case finding and have a pool of existing ontologies and associated computer algorithms for extracting the data.
We have ongoing research across a wide range of medical areas, with international collaborations in child health, diabetes and influenza vaccination and have an extensive set of data extraction, processing and analytic procedures we have developed which are readily available to existing and new research collaborators.
Is Part Of:
Not Applicable
Coverage
Spatial:
England
Typical Age Range:
0-150
Provenance
Temporal
Accrual Periodicity:
SEMIWEEKLY
Distribution Release Date:
11 December 2019
Start Date:
01 January 1960
Accessibility
Access
Access Rights:
Please complete our data request form at: https://www.rcgp.org.uk/-/media/Files/CIRC/Research-and-Surveillance-Centre/RCGP_RSC_Data_Request_Form_2018.ashx?la=enOur data can be used for SQUIRE purposes:SurveillanceQuality ImprovementResearchEducation There is no restriction on who can use our data, just the purpose. RCGP Study Approval Committee and possibly Ethical approval will also be required. General information about our network is at: http://www.rcgp.org.uk/rsc.https://clininf.eu/index.php/rcgp-rsc/https://clininf.eu/index.php/wlo/
Access Request Cost:
Access Request Cost: We don’t aim to charge more than the costs of running the
study.The scale and complexity of a study are two of the key determinants
driving the cost of a study. However, we aim to leverage on our previously
acquired domain knowledge and experience, including existing ontologies, code
lists, data extraction methods and statistical analyses.Observational
studies:Data only – cost of the extract, training (if needed) to access our
secure network statistical disclosure control prior to data releaseOther
requirements – questionnaires, samples, interviewsInterventional studies:In
addition to costs indicated as part of observational studies, interventional
study costs will be higher, accounting for ongoing monitoring of the
intervention with participating RCGP RSC network practices.National observatory
– provision:The development of automated reports, in data formats such as XML
and/or web-based dashboards, requires additional development and ongoing
maintenance and will require additional funding.Benefits to member practices:We
generally add a proportionate charge to provide benefits to member practices
(and ultimately their patients). This may often take the form of a dashboard and
quality improvement activity, domain related but under the editorial control of
RCGP RSC. Costing process Applicants will be responsible for any costs
associated with data extraction and other aspects of collaboration. Costs are
kept to a minimum. However, a RCGP RSC Practice Development Fund contribution in
included to develop benefits and data quality in member practices. Broadly 10%
of the value of contracts is reinvested into member practices, in addition to
any payments for research work undertaken. Any potential costs will be discussed
at the monthly RCGP RSC Operational meeting, held each month, and researchers
will be contacted as soon after the meeting as possible. Data extraction can
start once these costs have been through a University approval process and
formal agreements are in place.For studies requiring active participation of
General Practices, a contribution to cover practice staff members’ time and
expenses will be expected. This is set broadly in line with National Institute
for Health Research (NIHR) levels of charges for practice time.Please contact
the RCGP RSC team via the webpage
https://www.rcgp.org.uk/clinical-and-research/our-programmes/research-and-surveillance-centre.aspx.
Email the data request form, RCGP_RSC_Data_Request_Form.doc to
MedicalDirectorRSC@rcgp.org.uk"Applicants can “self-drive” their application
process or we offer a “Concierge” service where people pay a team member to
process their application on a cost for time basis.
Delivery Lead Time:
2-6 MONTHS
Jurisdictions:
GB
Data Controller:
The Royal College of General Practitioners (RCGP) is a policy level Data
Controller for RCGP RSC. Currently RCGP has a contract with University of Surrey
to be the Data Controller holding these data, this is migrating to University of
Oxford during 2020.
Data Processor:
Not Applicable
Usage
Resource Creators:
The Royal College of General Practitioners Research and Surveillance Centre (RCGP RSC)
Is Referenced By:
de Lusignan S, Correa A, Smith GE, Yonova I, Pebody R, Ferreira F, Elliot AJ, Fleming DM. RCGP Research and Surveillance Centre: 50 years’ surveillance of influenza, infections, and respiratory conditions. BJGP 2017; 67 (663): 440-441. DOI: https://doi.org/10.3399/bjgp17X692645. Correa A, Hinton W, McGovern A, van Vlymen J, Yonova I, Jones S, de Lusignan S. Royal College of General Practitioners Research and Surveillance Centre (RCGP RSC) sentinel network: a cohort profile. BMJ Open. 2016 Apr 20;6(4):e011092. Hinton W, McGovern A, Coyle R, Thang SH, Sharma P, Correa A, Ferreira F, de Lusignan s. Incidence and prevalence of cardiovascular disease in English primary care: a cross-sectional and follow-up study of the Royal College of General Practitioners (RCGP) Research and Surveillance Centre (RSC)BMJ Open 2018;8:e020282. doi: 10.1136/bmjopen-2017-020282 Whyte, M. B., Hinton, W., McGovern, A., van Vlymen, J., Ferreira, F., Calderara, S., … de Lusignan, S. (2019). Disparities in glycaemic control, monitoring, and treatment of type 2 diabetes in England: A retrospective cohort analysis. PLoS medicine, 16(10), e1002942. doi:10.1371/journal.pmed.1002942 Hill, E. M., Petrou, S., de Lusignan, S., Yonova, I., & Keeling, M. J. (2019). Seasonal influenza: Modelling approaches to capture immunity propagation. PLoS computational biology, 15(10), e1007096. doi:10.1371/journal.pcbi.1007096 Hoang U, James AC, Liyanage H, et al Determinants of inter-practice variation in ADHD diagnosis and stimulant prescribing: cross-sectional database study of a national surveillance network BMJ Evidence-Based Medicine 2019;24:155-161. Feher MD, Munro N, Russell-Jones D, de Lusignan S, Khunti K. Novel diabetes subgroups. Lancet Diabetes Endocrinol. 2018 Jun;6(6):439. doi: 10.1016/S2213-8587(18)30126-8. Pebody, R., Djennad, A., Ellis, J., Andrews, N., Marques, D., Cottrell, S., … Zambon, M. (2019). End of season influenza vaccine effectiveness in adults and children in the United Kingdom in 2017/18. Euro surveillance : bulletin Europeen sur les maladies transmissibles = European communicable disease bulletin, 24(31), 1800488. doi:10.2807/1560-7917.ES.2019.24.31.1800488 Woodmansey C, McGovern AP, McCullough KA, Whyte MB, Munro NM, Correa AC, Gatenby PAC, Jones SA, de Lusignan S. Incidence, Demographics, and Clinical Characteristics of Diabetes of the Exocrine Pancreas (Type 3c): A Retrospective Cohort Study. Diabetes Care. 2017 Aug 31. pii: dc170542. doi: 10.2337/dc17-0542. de Lusignan, S., Correa, A., Dos Santos, G., Meyer, N., Haguinet, F., Webb, R., … Jones, S. (2019). Enhanced Safety Surveillance of Influenza Vaccines in General Practice, Winter 2015-16: Feasibility Study. JMIR public health and surveillance, 5(4), e12016. doi:10.2196/12016 We continue to publish new ontologies in scientific journals and contribute to global repositories of machine processible ontologies, for example: Chronic Kidney disease Cole NI, Liyanage H, Suckling RJ, Swift PA, Gallagher H, Byford R, Williams J, Kumar S, de Lusignan S. An ontological approach to identifying cases of chronic kidney disease from routine primary care data: a cross-sectional study. BMC Nephrol. 2018 Apr 10;19(1):85. https://bioportal.bioontology.org/ontologies/CKDO Asthma Hoang U, Liyanage H, Coyle R, Godden C, Jones S, Blair M, Rigby M, de Lusignan S. Determinants of inter-practice variation in childhood asthma and respiratory infections: cross-sectional study of a national sentinel network. BMJ Open. 2019 Jan 24;9(1):e024372. https://bioportal.bioontology.org/ontologies/AO Infectious Intestinal Disease de Lusignan, S., Shinneman, S., Yonova, I., van Vlymen, J., Elliot, A. J., Bolton, F., … O\u0027Brien, S. (2017). An Ontology to Improve Transparency in Case Definition and Increase Case Finding of Infectious Intestinal Disease: Database Study in English General Practice. JMIR medical informatics, 5(3), e34. doi:10.2196/medinform.7641 Ethnicity Tippu Z, Correa A, Liyanage H, Burleigh D, McGovern A, Van Vlymen J, Jones S, De Lusignan S. Ethnicity Recording in Primary Care Computerised Medical Record Systems: An Ontological Approach. J Innov Health Inform. 2017 Mar 14;23(4):920. https://bioportal.bioontology.org/ontologies/EO
Format and Standards
Vocabulary Encoding Schemes:
SNOMED CT
Languages:
en
Formats:
CSV – SQL - XML
Enrichment and Linkage
Qualified Relations:
- Data is linked using an NHS Digital approved process. Linkage to : Hospital Episode Statistics (HES) Office for National Statistics (ONS) Cancer registry (CANREG) We can also link to virology samples and genetic data
- subject to ethical approval
Derivations:
- The entire database is available to researchers
- through the data access process (. Pre-defined extracts are available at minimal cost (based on the principle that extraction processes previously developed will be re-used
- thus incurring minimal cost for future researchers). These pre-defined extracts cover: • Charlson comorbidity score • Frailty index • Extracts of our monitored conditions. • Risk scores including: CHA2DS2–VASc score
Origin
Name:
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