The Upper Gastrointestinal Cancer Registry (UGICR) : a clinical quality registry to monitor and improve care in upper gastrointestinal cancers

Ashika D. Maharaj; Jennifer F. Holland; Ri O. Scarborough; Sue M. Evans; Liane J. Ioannou; Wendy Brown; Daniel G. Croagh; Charles H. C. Pilgrim; James G. Kench; Lara R. Lipton; Trevor Leong; John J. McNeil; Mehrdad Nikfarjam; Ahmad Aly; Paul R. Burton; Paul A. Cashin; Julie Chu; Cuong P. Duong; Peter Evans; David Goldstein; Andrew Haydon; Michael W. Hii; Brett P. F. Knowles; Neil D. Merrett; Michael Michael; Rachel E. Neale; Jennifer Philip; Ian W. T. Porter; Marty Smith; John Spillane; Peter P. Tagkalidis; John R. Zalcberg

doi:10.1136/bmjopen-2019-031434

The Upper Gastrointestinal Cancer Registry (UGICR) : a clinical quality registry to monitor and improve care in upper gastrointestinal cancers

Ashika D. Maharaj, Jennifer F. Holland, Ri O. Scarborough, Sue M. Evans, Liane J. Ioannou, Wendy Brown, Daniel G. Croagh, Charles H. C. Pilgrim, James G. Kench, Lara R. Lipton, Trevor Leong, John J. McNeil, Mehrdad Nikfarjam, Ahmad Aly, Paul R. Burton, Paul A. Cashin, Julie Chu, Cuong P. Duong, Peter Evans, David GoldsteinAndrew Haydon, Michael W. Hii, Brett P. F. Knowles, Neil D. Merrett, Michael Michael, Rachel E. Neale, Jennifer Philip, Ian W. T. Porter, Marty Smith, John Spillane, Peter P. Tagkalidis, John R. Zalcberg

Western Sydney University

Research output: Contribution to journal › Article › peer-review

Abstract

Purpose The Upper Gastrointestinal Cancer Registry (UGICR) was developed to monitor and improve the quality of care provided to patients with upper gastrointestinal cancers in Australia. Participants It supports four cancer modules: Pancreatic, oesophagogastric, biliary and primary liver cancer. The pancreatic cancer (PC) module was the first module to be implemented, with others being established in a staged approach. Individuals are recruited to the registry if they are aged 18 years or older, have received care for their cancer at a participating public/private hospital or private clinic in Australia and do not opt out of participation. Findings to date The UGICR is governed by a multidisciplinary steering committee that provides clinical governance and oversees clinical working parties. The role of the working parties is to develop quality indicators based on best practice for each registry module, develop the minimum datasets and provide guidance in analysing and reporting of results. Data are captured from existing data sources (population-based cancer incidence registries, pathology databases and hospital-coded data) and manually from clinical records. Data collectors directly enter information into a secure web-based Research Electronic Data Capture (REDCap) data collection platform. The PC module began with a pilot phase, and subsequently, we used a formal modified Delphi consensus process to establish a core set of quality indicators for PC. The second module developed was the oesophagogastric cancer (OGC) module. Results of the 1 year pilot phases for PC and OGC modules are included in this cohort profile. Future plans The UGICR will provide regular reports of risk-adjusted, benchmarked performance on a range of quality indicators that will highlight variations in care and clinical outcomes at a health service level. The registry has also been developed with the view to collect patient-reported outcomes (PROs), which will further add to our understanding of the care of patients with these cancers. © 2019 Author(s).

Original language	English
Article number	e031434
Number of pages	11
Journal	BMJ Open
Volume	9
Issue number	9
DOIs	https://doi.org/10.1136/bmjopen-2019-031434
Publication status	Published - 2019

Open Access - Access Right Statement

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/ licenses/by-nc/4.0/

Keywords

cancer
gastrointestinal system
liver
stomach

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1136/bmjopen-2019-031434

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Maharaj, A. D., Holland, J. F., Scarborough, R. O., Evans, S. M., Ioannou, L. J., Brown, W., Croagh, D. G., Pilgrim, C. H. C., Kench, J. G., Lipton, L. R., Leong, T., McNeil, J. J., Nikfarjam, M., Aly, A., Burton, P. R., Cashin, P. A., Chu, J., Duong, C. P., Evans, P., ... Zalcberg, J. R. (2019). The Upper Gastrointestinal Cancer Registry (UGICR) : a clinical quality registry to monitor and improve care in upper gastrointestinal cancers. BMJ Open, 9(9), Article e031434. https://doi.org/10.1136/bmjopen-2019-031434

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title = "The Upper Gastrointestinal Cancer Registry (UGICR) : a clinical quality registry to monitor and improve care in upper gastrointestinal cancers",

abstract = "Purpose The Upper Gastrointestinal Cancer Registry (UGICR) was developed to monitor and improve the quality of care provided to patients with upper gastrointestinal cancers in Australia. Participants It supports four cancer modules: Pancreatic, oesophagogastric, biliary and primary liver cancer. The pancreatic cancer (PC) module was the first module to be implemented, with others being established in a staged approach. Individuals are recruited to the registry if they are aged 18 years or older, have received care for their cancer at a participating public/private hospital or private clinic in Australia and do not opt out of participation. Findings to date The UGICR is governed by a multidisciplinary steering committee that provides clinical governance and oversees clinical working parties. The role of the working parties is to develop quality indicators based on best practice for each registry module, develop the minimum datasets and provide guidance in analysing and reporting of results. Data are captured from existing data sources (population-based cancer incidence registries, pathology databases and hospital-coded data) and manually from clinical records. Data collectors directly enter information into a secure web-based Research Electronic Data Capture (REDCap) data collection platform. The PC module began with a pilot phase, and subsequently, we used a formal modified Delphi consensus process to establish a core set of quality indicators for PC. The second module developed was the oesophagogastric cancer (OGC) module. Results of the 1 year pilot phases for PC and OGC modules are included in this cohort profile. Future plans The UGICR will provide regular reports of risk-adjusted, benchmarked performance on a range of quality indicators that will highlight variations in care and clinical outcomes at a health service level. The registry has also been developed with the view to collect patient-reported outcomes (PROs), which will further add to our understanding of the care of patients with these cancers. {\textcopyright} 2019 Author(s).",

keywords = "cancer, gastrointestinal system, liver, stomach",

author = "Maharaj, {Ashika D.} and Holland, {Jennifer F.} and Scarborough, {Ri O.} and Evans, {Sue M.} and Ioannou, {Liane J.} and Wendy Brown and Croagh, {Daniel G.} and Pilgrim, {Charles H. C.} and Kench, {James G.} and Lipton, {Lara R.} and Trevor Leong and McNeil, {John J.} and Mehrdad Nikfarjam and Ahmad Aly and Burton, {Paul R.} and Cashin, {Paul A.} and Julie Chu and Duong, {Cuong P.} and Peter Evans and David Goldstein and Andrew Haydon and Hii, {Michael W.} and Knowles, {Brett P. F.} and Merrett, {Neil D.} and Michael Michael and Neale, {Rachel E.} and Jennifer Philip and Porter, {Ian W. T.} and Marty Smith and John Spillane and Tagkalidis, {Peter P.} and Zalcberg, {John R.}",

year = "2019",

doi = "10.1136/bmjopen-2019-031434",

language = "English",

volume = "9",

journal = "BMJ Open",

issn = "2044-6055",

publisher = "BMJ Group",

number = "9",

}

Maharaj, AD, Holland, JF, Scarborough, RO, Evans, SM, Ioannou, LJ, Brown, W, Croagh, DG, Pilgrim, CHC, Kench, JG, Lipton, LR, Leong, T, McNeil, JJ, Nikfarjam, M, Aly, A, Burton, PR, Cashin, PA, Chu, J, Duong, CP, Evans, P, Goldstein, D, Haydon, A, Hii, MW, Knowles, BPF, Merrett, ND, Michael, M, Neale, RE, Philip, J, Porter, IWT, Smith, M, Spillane, J, Tagkalidis, PP & Zalcberg, JR 2019, 'The Upper Gastrointestinal Cancer Registry (UGICR) : a clinical quality registry to monitor and improve care in upper gastrointestinal cancers', BMJ Open, vol. 9, no. 9, e031434. https://doi.org/10.1136/bmjopen-2019-031434

TY - JOUR

T1 - The Upper Gastrointestinal Cancer Registry (UGICR) : a clinical quality registry to monitor and improve care in upper gastrointestinal cancers

AU - Maharaj, Ashika D.

AU - Holland, Jennifer F.

AU - Scarborough, Ri O.

AU - Evans, Sue M.

AU - Ioannou, Liane J.

AU - Brown, Wendy

AU - Croagh, Daniel G.

AU - Pilgrim, Charles H. C.

AU - Kench, James G.

AU - Lipton, Lara R.

AU - Leong, Trevor

AU - McNeil, John J.

AU - Nikfarjam, Mehrdad

AU - Aly, Ahmad

AU - Burton, Paul R.

AU - Cashin, Paul A.

AU - Chu, Julie

AU - Duong, Cuong P.

AU - Evans, Peter

AU - Goldstein, David

AU - Haydon, Andrew

AU - Hii, Michael W.

AU - Knowles, Brett P. F.

AU - Merrett, Neil D.

AU - Michael, Michael

AU - Neale, Rachel E.

AU - Philip, Jennifer

AU - Porter, Ian W. T.

AU - Smith, Marty

AU - Spillane, John

AU - Tagkalidis, Peter P.

AU - Zalcberg, John R.

PY - 2019

Y1 - 2019

N2 - Purpose The Upper Gastrointestinal Cancer Registry (UGICR) was developed to monitor and improve the quality of care provided to patients with upper gastrointestinal cancers in Australia. Participants It supports four cancer modules: Pancreatic, oesophagogastric, biliary and primary liver cancer. The pancreatic cancer (PC) module was the first module to be implemented, with others being established in a staged approach. Individuals are recruited to the registry if they are aged 18 years or older, have received care for their cancer at a participating public/private hospital or private clinic in Australia and do not opt out of participation. Findings to date The UGICR is governed by a multidisciplinary steering committee that provides clinical governance and oversees clinical working parties. The role of the working parties is to develop quality indicators based on best practice for each registry module, develop the minimum datasets and provide guidance in analysing and reporting of results. Data are captured from existing data sources (population-based cancer incidence registries, pathology databases and hospital-coded data) and manually from clinical records. Data collectors directly enter information into a secure web-based Research Electronic Data Capture (REDCap) data collection platform. The PC module began with a pilot phase, and subsequently, we used a formal modified Delphi consensus process to establish a core set of quality indicators for PC. The second module developed was the oesophagogastric cancer (OGC) module. Results of the 1 year pilot phases for PC and OGC modules are included in this cohort profile. Future plans The UGICR will provide regular reports of risk-adjusted, benchmarked performance on a range of quality indicators that will highlight variations in care and clinical outcomes at a health service level. The registry has also been developed with the view to collect patient-reported outcomes (PROs), which will further add to our understanding of the care of patients with these cancers. © 2019 Author(s).

AB - Purpose The Upper Gastrointestinal Cancer Registry (UGICR) was developed to monitor and improve the quality of care provided to patients with upper gastrointestinal cancers in Australia. Participants It supports four cancer modules: Pancreatic, oesophagogastric, biliary and primary liver cancer. The pancreatic cancer (PC) module was the first module to be implemented, with others being established in a staged approach. Individuals are recruited to the registry if they are aged 18 years or older, have received care for their cancer at a participating public/private hospital or private clinic in Australia and do not opt out of participation. Findings to date The UGICR is governed by a multidisciplinary steering committee that provides clinical governance and oversees clinical working parties. The role of the working parties is to develop quality indicators based on best practice for each registry module, develop the minimum datasets and provide guidance in analysing and reporting of results. Data are captured from existing data sources (population-based cancer incidence registries, pathology databases and hospital-coded data) and manually from clinical records. Data collectors directly enter information into a secure web-based Research Electronic Data Capture (REDCap) data collection platform. The PC module began with a pilot phase, and subsequently, we used a formal modified Delphi consensus process to establish a core set of quality indicators for PC. The second module developed was the oesophagogastric cancer (OGC) module. Results of the 1 year pilot phases for PC and OGC modules are included in this cohort profile. Future plans The UGICR will provide regular reports of risk-adjusted, benchmarked performance on a range of quality indicators that will highlight variations in care and clinical outcomes at a health service level. The registry has also been developed with the view to collect patient-reported outcomes (PROs), which will further add to our understanding of the care of patients with these cancers. © 2019 Author(s).

KW - cancer

KW - gastrointestinal system

KW - liver

KW - stomach

UR - https://hdl.handle.net/1959.7/uws:53782

U2 - 10.1136/bmjopen-2019-031434

DO - 10.1136/bmjopen-2019-031434

M3 - Article

SN - 2044-6055

VL - 9

JO - BMJ Open

JF - BMJ Open

IS - 9

M1 - e031434

ER -

The Upper Gastrointestinal Cancer Registry (UGICR) : a clinical quality registry to monitor and improve care in upper gastrointestinal cancers

Abstract

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Keywords

UN SDGs

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