Cross-sectional study of characteristics of clinical registries in Australia

A resource for clinicians and policy makers

Research output: Contribution to journalArticleResearchpeer-review

2 Citations (Scopus)

Abstract

Objectives: To investigate the attributes of Australian clinical quality registries (CQR). Design and setting: Survey of 40 CQRs between September 2015 and April 2016. Participants: CQR lead investigators/project managers. Intervention: None. Main outcome measures: Registry organization, geographical coverage, data quality, management, characteristics, output and outcomes. Results: Of those who responded (34/40; 85.0%), 12 (34.3%) were binational (Australia and New Zealand); 22 (64.7%) were Australian-only registries; and 13 (38.2%) had national coverage. CQRs covered critical care, infection control, cardiovascular diseases, cancer, chronic diseases, procedures and devices, and transplants. Overall, 24/34 CQRs (70.6%) were public sector funded. In total, 14 (41.2%) scored >75% on a composite score developed to assess data quality. Overall, 29/ 34 (85.3%) produced an annual multi-centred report; only 15/34 (44.1%) produced provider-specific reports. Mortality/survival and quality of life were collected by 82.4 and 32.4% of CQRs, respectively. Most CQRs displayed data in bar/column charts (28/34, 82.4%) and funnel plots (17/34, 50%). Most CQRs adopted an opt-out consent process (n = 17/31; 54.8%). Linear regression indicated that longer duration of CQR was associated with higher data quality (>20 vs 0-5 years coefficient = 4.76, 95% CI: 0.26, 9.26). Opt-in consent was associated with lower data quality (no active consent vs opt-in approval method, coefficient = -5.22, 95% CI: -8.71, -1.72). Six CQRs self-reported having undertaken an economic evaluation of their registry. Conclusion: CQRs varied in geographical coverage; stage of development, approach to recruitment; method and frequency of reporting their output; and data quality assurance. An accreditation system for CQRs would likely assist in recognizing high-quality registries.

Original languageEnglish
Pages (from-to)192-199
Number of pages8
JournalInternational Journal for Quality in Health Care
Volume30
Issue number3
DOIs
Publication statusPublished - 1 Apr 2018

Keywords

  • Australia
  • Clinical
  • Coverage
  • Data quality
  • Feedback
  • Patient outcomes
  • Quality
  • Registry
  • Survey

Cite this

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title = "Cross-sectional study of characteristics of clinical registries in Australia: A resource for clinicians and policy makers",
abstract = "Objectives: To investigate the attributes of Australian clinical quality registries (CQR). Design and setting: Survey of 40 CQRs between September 2015 and April 2016. Participants: CQR lead investigators/project managers. Intervention: None. Main outcome measures: Registry organization, geographical coverage, data quality, management, characteristics, output and outcomes. Results: Of those who responded (34/40; 85.0{\%}), 12 (34.3{\%}) were binational (Australia and New Zealand); 22 (64.7{\%}) were Australian-only registries; and 13 (38.2{\%}) had national coverage. CQRs covered critical care, infection control, cardiovascular diseases, cancer, chronic diseases, procedures and devices, and transplants. Overall, 24/34 CQRs (70.6{\%}) were public sector funded. In total, 14 (41.2{\%}) scored >75{\%} on a composite score developed to assess data quality. Overall, 29/ 34 (85.3{\%}) produced an annual multi-centred report; only 15/34 (44.1{\%}) produced provider-specific reports. Mortality/survival and quality of life were collected by 82.4 and 32.4{\%} of CQRs, respectively. Most CQRs displayed data in bar/column charts (28/34, 82.4{\%}) and funnel plots (17/34, 50{\%}). Most CQRs adopted an opt-out consent process (n = 17/31; 54.8{\%}). Linear regression indicated that longer duration of CQR was associated with higher data quality (>20 vs 0-5 years coefficient = 4.76, 95{\%} CI: 0.26, 9.26). Opt-in consent was associated with lower data quality (no active consent vs opt-in approval method, coefficient = -5.22, 95{\%} CI: -8.71, -1.72). Six CQRs self-reported having undertaken an economic evaluation of their registry. Conclusion: CQRs varied in geographical coverage; stage of development, approach to recruitment; method and frequency of reporting their output; and data quality assurance. An accreditation system for CQRs would likely assist in recognizing high-quality registries.",
keywords = "Australia, Clinical, Coverage, Data quality, Feedback, Patient outcomes, Quality, Registry, Survey",
author = "Hoque, {Dewan Md Emdadul} and Rasa Ruseckaite and Paula Lorgelly and McNeil, {John J} and Evans, {Sue M}",
year = "2018",
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language = "English",
volume = "30",
pages = "192--199",
journal = "International Journal for Quality in Health Care",
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T1 - Cross-sectional study of characteristics of clinical registries in Australia

T2 - A resource for clinicians and policy makers

AU - Hoque, Dewan Md Emdadul

AU - Ruseckaite, Rasa

AU - Lorgelly, Paula

AU - McNeil, John J

AU - Evans, Sue M

PY - 2018/4/1

Y1 - 2018/4/1

N2 - Objectives: To investigate the attributes of Australian clinical quality registries (CQR). Design and setting: Survey of 40 CQRs between September 2015 and April 2016. Participants: CQR lead investigators/project managers. Intervention: None. Main outcome measures: Registry organization, geographical coverage, data quality, management, characteristics, output and outcomes. Results: Of those who responded (34/40; 85.0%), 12 (34.3%) were binational (Australia and New Zealand); 22 (64.7%) were Australian-only registries; and 13 (38.2%) had national coverage. CQRs covered critical care, infection control, cardiovascular diseases, cancer, chronic diseases, procedures and devices, and transplants. Overall, 24/34 CQRs (70.6%) were public sector funded. In total, 14 (41.2%) scored >75% on a composite score developed to assess data quality. Overall, 29/ 34 (85.3%) produced an annual multi-centred report; only 15/34 (44.1%) produced provider-specific reports. Mortality/survival and quality of life were collected by 82.4 and 32.4% of CQRs, respectively. Most CQRs displayed data in bar/column charts (28/34, 82.4%) and funnel plots (17/34, 50%). Most CQRs adopted an opt-out consent process (n = 17/31; 54.8%). Linear regression indicated that longer duration of CQR was associated with higher data quality (>20 vs 0-5 years coefficient = 4.76, 95% CI: 0.26, 9.26). Opt-in consent was associated with lower data quality (no active consent vs opt-in approval method, coefficient = -5.22, 95% CI: -8.71, -1.72). Six CQRs self-reported having undertaken an economic evaluation of their registry. Conclusion: CQRs varied in geographical coverage; stage of development, approach to recruitment; method and frequency of reporting their output; and data quality assurance. An accreditation system for CQRs would likely assist in recognizing high-quality registries.

AB - Objectives: To investigate the attributes of Australian clinical quality registries (CQR). Design and setting: Survey of 40 CQRs between September 2015 and April 2016. Participants: CQR lead investigators/project managers. Intervention: None. Main outcome measures: Registry organization, geographical coverage, data quality, management, characteristics, output and outcomes. Results: Of those who responded (34/40; 85.0%), 12 (34.3%) were binational (Australia and New Zealand); 22 (64.7%) were Australian-only registries; and 13 (38.2%) had national coverage. CQRs covered critical care, infection control, cardiovascular diseases, cancer, chronic diseases, procedures and devices, and transplants. Overall, 24/34 CQRs (70.6%) were public sector funded. In total, 14 (41.2%) scored >75% on a composite score developed to assess data quality. Overall, 29/ 34 (85.3%) produced an annual multi-centred report; only 15/34 (44.1%) produced provider-specific reports. Mortality/survival and quality of life were collected by 82.4 and 32.4% of CQRs, respectively. Most CQRs displayed data in bar/column charts (28/34, 82.4%) and funnel plots (17/34, 50%). Most CQRs adopted an opt-out consent process (n = 17/31; 54.8%). Linear regression indicated that longer duration of CQR was associated with higher data quality (>20 vs 0-5 years coefficient = 4.76, 95% CI: 0.26, 9.26). Opt-in consent was associated with lower data quality (no active consent vs opt-in approval method, coefficient = -5.22, 95% CI: -8.71, -1.72). Six CQRs self-reported having undertaken an economic evaluation of their registry. Conclusion: CQRs varied in geographical coverage; stage of development, approach to recruitment; method and frequency of reporting their output; and data quality assurance. An accreditation system for CQRs would likely assist in recognizing high-quality registries.

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KW - Clinical

KW - Coverage

KW - Data quality

KW - Feedback

KW - Patient outcomes

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KW - Survey

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