Dataset Information

Improving data quality in observational research studies: Report of the Cure Glomerulonephropathy (CureGN) network.

ABSTRACT:

Background

High data quality is of crucial importance to the integrity of research projects. In the conduct of multi-center observational cohort studies with increasing types and quantities of data, maintaining data quality is challenging, with few published guidelines.

Methods

The Cure Glomerulonephropathy (CureGN) Network has established numerous quality control procedures to manage the 70 participating sites in the United States, Canada, and Europe. This effort is supported and guided by the activities of several committees, including Data Quality, Recruitment and Retention, and Central Review, that work in tandem with the Data Coordinating Center to monitor the study. We have implemented coordinator training and feedback channels, data queries of questionable or missing data, and developed performance metrics for recruitment, retention, visit completion, data entry, recording of patient-reported outcomes, collection, shipping and accessing of biological samples and pathology materials, and processing, cataloging and accessing genetic data and materials.

Results

We describe the development of data queries and site Report Cards, and their use in monitoring and encouraging excellence in site performance. We demonstrate improvements in data quality and completeness over 4 years after implementing these activities. We describe quality initiatives addressing specific challenges in collecting and cataloging whole slide images and other kidney pathology data, and novel methods of data quality assessment.

Conclusions

This paper reports the CureGN experience in optimizing data quality and underscores the importance of general and study-specific data quality initiatives to maintain excellence in the research measures of a multi-center observational study.

SUBMITTER: Gillespie BW

PROVIDER: S-EPMC8039553 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundSuccessful implementation of pay-for-quality (P4Q) programs mostly depends upon a valid, timely, and reliable data about quality measures generated by providers, and interpreted by payers. The aim of this study was to establish a data reporting method for P4Q program through an action research.MethodsQualitative method was used to align theory with action through a three-cycle action research. The study was conducted in September 15, 2015 to March 15, 2017, in East-Azerbaijan, Iran. The purposeful sampling was used to select participants. The participants included healthcare providers, staff in district health centers (DHC), experts, and managers in the provincial primary health center (PPHC). Data was collected by interviews, focus group discussions, and expert panels. Content analysis was used to synthesize the data. In each step, decisions about data reporting methods were made through a consensus of expert panel members.ResultsThe most important dimensions of data reporting method were data entry and accuracy, data reporting, data analysis and interpretations, the flexibility of method, and training. By establishment of an online data reporting system for the P4Q program, a major improvement was observed in the documentation of performance data, the satisfaction of health care providers and staff (e.g. either in DHCs or PPHC), improvement of the P4Q program and acceptance of the P4Q program by providers. Following the present study, the online system was expanded in Iran's public health system for data collection and estimating the amount of incentive payments in P4Q program. Moreover, more improvements were achieved by linking the system to EMRs and also, providing automated feedback to providers about their own performance.ConclusionsA web-based computerized system with the capability of linking medical record and also its ability to provide feedback to healthcare providers was identified as an appropriate method of data reporting in the P4Q program from the viewpoints of participants in this study.