A concrete outgrowth of the Disparities Leadership Program and the Health Care Quality and Equity Action Forum has been the development of a Pediatric Health Equity Collaborative comprised of 11 organizations working together with the goals of establishing best practices, lessons learned, and recommendations for the field with regard to race, ethnicity, language, and other demographic data collection in pediatric care settings.
Click here for an example of how one organization collects data to facilitate culturally competent communication between patients and providers.
Click here for a working document that describes data collection practices of several PHEC member organizations within 6 key domains.
Click here to read the publication from the Pediatric Health Equity Collaborative titled A Patient and Family Data Domain Collection Framework for Identifying Disparities in Pediatrics.
Background: By 2020, the child population is projected to have more racial and ethnic minorities make up the majority of the populations and health care organizations will need to have a system in place that collects accurate and reliable demographic data in order to monitor disparities. The goals of this group were to establish sample practices, approaches and lessons learned with regard to race, ethnicity, language, and other demographic data collection in pediatric care setting.
Methods: A panel of 16 research and clinical professional experts working in 10 pediatric care delivery systems in the US and Canada convened twice in person for 3-day consensus development meetings and met multiple times via conference calls over a two year period. Current evidence on adult demographic data collection was systematically reviewed and unique aspects of data collection in the pediatric setting were outlined. Human centered design methods were utilized to facilitate theme development, facilitate constructive and innovative discussion, and generate consensus.
Results: Group consensus determined six final data collection domains: 1) caregivers, 2) race and ethnicity, 3) language, 4) sexual orientation and gender identity, 5) disability, and 6) social determinants of health. For each domain, the group defined the domain, established a rational for collection, identified the unique challenges for data collection in a pediatric setting, and developed sample practices which are based on the experience of the members as a starting point to allow for customization unique to each health care organization. Several unique challenges in the pediatric setting across all domains include: data collection on caregivers, determining an age at which it is appropriate to collect data from the patient, collecting and updating data at multiple points across the lifespan, the limits of the electronic health record, and determining the purpose of the data collection before implementation.
Conclusions: There is no single approach that will work for all organizations when collecting race, ethnicity, language and other social determinants of health data. Each organization will need to tailor their data collection based on the population they serve, the financial resources available, and the capacity of the electronic health record.
For more information, contact:
Aswita Tan-McGrory, MBA, MSPH
The Disparities Solutions Center
Massachusetts General Hospital
100 Cambridge Street, Suite 1600
Boston, MA 02114
Phone: (617) 643-2916