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DOI: 10.1055/a-2206-6790
Unlocking the Power of Data: Standardized Data Collection in Pediatric Surgery
With the general advances in technology over the last decades, data collection for a wide range of health care purposes has become easier than ever. Concurrently, health care professionals have been experiencing a continuously increasing administrative burden.[1] [2] Therefore, optimizing data collection and data use is essential, especially in rare (congenital) conditions where patient numbers are low, making the collected data automatically more valuable. Many recent efforts have been made to standardize data sets and centralize data collection, aimed at maximizing the usability of data collected for research, quality control, or other purposes. This review block aims to emphasize the importance of measurement standardization in research and clinical practice while exemplifying past or ongoing efforts, including relevant methodologies, to achieve such improved standardization of data collection in pediatric surgery.
The systematic review contributed by Rossi et al describes the great variability of studied parameters in Hirschsprung's disease, hindering the ability to make meaningful overarching comparisons of results of individual studies and underscoring the need for standardization of measurement in research to generate a robust evidence base.
Core outcome sets are designed to do just that: standardize the outcomes studied and reported in research projects on specific areas of health or health care.[3] Allin et al provide an overview of core outcome sets currently available in the field of pediatric surgery, additionally discussing the development methodologies and implementation of such sets.
Standardizing the measurement of care outcomes and quality of clinical practice is equally important to enable meaningful benchmarking, allow for real-world data comparison, and enhance the overall quality of care. Madadi-Sanjani and Ure describe the current lack of standardized complication registration in research and patient registries in pediatric surgery. They plead for uniform assessment and documentation of adverse events of treatment in the pediatric population through implementing the pediatric Clavien-Madadi classification system.
Another way to measure care outcomes is through patients using patient-reported outcome measures (PROMs). Spivack et al present an overview of currently available PROMs and their implementation in current pediatric surgical practice.
Not only standardizing outcome measurement but also standardizing care itself and reducing practice variation is important, especially in rare diseases. Irvine et al present an overview of guideline development methodology and implementation strategies, and provide an update on the currently available guidelines in pediatric surgery and their quality.
The last part of this review block emphasizes the value of collective data collection. It consists of three examples of national and international patient registries for centralized data collection in rare congenital conditions. Sfeir et al describe the development of the French Esophageal Atresia Registry and present an overview of the results of this population-based cohort, including 2,137 patients since 2008. Holden et al describe the formation, structure, and results of the CDH Study Group Registry, a global research initiative that, since 1995, has accumulated data on over 14,000 infants born with congenital diaphragmatic hernia. Finally, Avitzur et al describe the development, structure, and key findings of the International Intestinal Failure Registry, a prospective research database currently holding data for 362 children with intestinal failure. Each of these registries has significantly contributed to the knowledge of these rare conditions, demonstrating the effectiveness of collaboration both within and outside national borders.
As evidenced by these reviews, standardization of data collection in the field of pediatric surgery is of the utmost importance and should be a top priority. This importance is also recognized by the European Reference Network for Inherited and Congenital Anomalies (ERNICA), which is currently implementing the European Pediatric Surgical Audit as its official prospective patient registry for congenital malformations. Centralizing European data collection in this audit, by defining and using standardized data sets in alignment with other patient registries covering these malformations, will reduce the administrative burden and maximize the usability of the data. We trust that this review block provides the readership of this journal with a comprehensive overview of the progress that has already been made in standardizing data collection in our field. Above all, we hope that it encourages the readers to get involved in ongoing or future projects aimed at further bridging the remaining standardization gaps and unlocking the full power of health data.
Publication History
Received: 31 October 2023
Accepted: 04 November 2023
Accepted Manuscript online:
08 November 2023
Article published online:
19 January 2024
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References
- 1 Rao SK, Kimball AB, Lehrhoff SR. et al. The impact of administrative burden on academic physicians: results of a hospital-wide physician survey. Acad Med 2017; 92 (02) 237-243
- 2 Himmelstein DU, Campbell T, Woolhandler S. Health care administrative costs in the United States and Canada, 2017. Ann Intern Med 2020; 172 (02) 134-142
- 3 Williamson PR, Altman DG, Bagley H. et al. The COMET Handbook: version 1.0. Trials 2017; 18 (Suppl. 03) 280