JMIR Publications

ABSTRACT

Background:

Common Data Models (CDMs) are essential tools for data harmonization, which can lead to significant improvements in the health domain. CDMs unite data from disparate sources and ease collaborations across institutions, resulting in the generation of large standardized data repositories across different entities. An overview of existing CDMs and methods used to develop these datasets may assist the development process of future models for the health domain, e.g., for decision support systems.

Objective:

This Scoping Review (Sc-R) investigates methods used in the development of CDMs for health data. We aim to provide a broad overview of approaches and guidelines that are used in developing CDMs, i.e., Common Data Elements (CDEs) or Common Data Sets (CDS), for different health domains on an international level.

Methods:

This Sc-R is following the “Preferred Reporting Items for Systematic Review and Meta-Analysis extension for Scoping Reviews” (PRISMA-ScR) Checklist. We conducted our literature research in prominent databases, namely PubMed, Web of Science, Science Direct, and Scopus starting from January 2000 until March 2022. We identified and screened 1309 articles. The included articles are evaluated based on the type of the utilized method, which was used in the conception, users’ needs collection, implementation, and evaluation phase of CDMs, and whether stakeholders (such as medical experts, patients’ representatives, and IT Staff) were involved during this process. Moreover, the models are grouped into iterative or linear types based on the imperativeness of the stages during development.

Results:

We finally identified 59 articles that fit our eligibility criteria. Of these articles, 45 specifically focus on common medical conditions, 10 on rare medical conditions, and the remaining 4 are fitting to both categories. The development process usually involves stakeholders, but in different ways (e.g., working group meetings, Delphi, interviews, and questionnaires). 22 models followed an iterative process.

Conclusions:

The articles included show the diversity of methods used to develop a CDM in different domains of health. We highlight the need for more specialized CDM development methods in the health domains and propose a suggestive development process that might ease the development process of the CDMs in the health domain in the future.