DEMo FHIR questionnaire and implementation guide development (PSS-2643)

The Demographic Data Element Modernization (DEMo) Initiative is a multi-phased program spearheaded through a partnership between AHIP, Civitas Networks for Health, and Health Level 7 International.  The goal of the initiative is to improve existing demographic data standards so that health care organizations can better identify disparities and inform responsive care.

Despite significant investments in data collection, current demographic data content standards often result in varied, inaccurate, or incomplete data that are unreliable or unusable. Even when comprehensive and accurate data are collected, there are challenges with exchanging the data electronically. Moreover, there is a lack of patient trust in why the information is sought and abrasion over the repeated questions across sites.  

The initiative aims to modernize and enhance national demographic data content and exchange standards, so that they are sufficiently granular, culturally sensitive, and allow for alignment across stakeholders. This will facilitate the collection of accurate, complete, comparable, actionable and interoperable data that supports better outcomes, fewer disparities, improved patient trust and enhanced operational efficiency.

Relevant HL7 standards and initiatives, including existing FHIR patient demographics profiles, US Core, Gender Harmony, Electronic Case Reporting, and Military Service History and Status, were evaluated and integrated into this undertaking, with the recognition that its overall scope and complexity surpass those of the individual efforts referenced.

The initiative brought together nearly 140 organizations including 8 federal agencies to develop proposed questions, response choices, and introductory language for consumers. The initiative then worked with the Patient Advocate Foundation’s Patient Insight Institute to perform cognitive testing across consumers and clinicians to validate the effectiveness and appropriateness of candidate demographic questionnaire information.  A draft FHIR questionnaire reflecting the work to date and changes based on testing is available to kick-start the workgroup’s review. 

This project will codify the finalized set of demographic questionnaire information into a FHIR questionnaire and accompanying FHIR Implementation Guide.