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.
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.
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.
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.
US Census Bureau: Most children younger than age 1 are minorities, Census Bureau reports. 2012.
Colby SL, Ortman JM. Projections of the size and compositions of the US population: 2014 to 2060, current population reports. Washington: US Census Bureau; 2014.
Institute of Medicine Committee on Lesbian G, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities. The Health of Lesbian, Gay, Bisexual, and Transgender People. Building a Foundation for Better Understanding. Washington: National Academies Press; 2011.
Committee on the Recommended Social and Behavioral Domains and Measures for Electronic Health Records; Board on Population Health and Public Health Practice IoM. Capturing social and behavioral domains and measures in electronic health records: phase 2. Washington (DC): The National Academies Press; 2014.
Department of Health and Human Services Office of the Secretary: 2015 edition health information technology (health IT) certification criteria, 2015 Edition Base electronic health record (EHR) definition, and ONC health IT certification program modifications. 2015.
The Institute of Medicine Committee on Disability in America. The Future of Disability in America. Washington: National Academies Press; 2007.
International Classification of Functioning, Disability and Health (ICF) [ http://www.who.int/classifications/icf/en/].
Hasnain-Wynia R, Pierce D, Haque A, Hedges Greising C, Prince V, Reiter J: Health Research and Educational Trust Disparities Toolkit. 2007.
Ulmer C, McFadden B, Nerenz DR, Institute of Medicine (U.S.) Subcommittee on standardized collection of race/ethnicity data for healthcare quality improvement board on health care services. In: Race, ethnicity, and language data: standardization for health care quality improvement. Washington, D.C.: National Academies Press; 2009.
United Nations, Department of Economic and Social Affairs, Statistics Division. Principles and recommendations for a vital statistics system, revision 3. New York: United Nations; 2014.
Giacomin J. What is human centred design? Des J. 2014;17(4):606–23.
Harvard Business Review. A Taxonomy of Innovation (Based on the work of Luma Institute). Harvard Business Review; 2014.
Conway J, Johnson B, Edgman-Levitan S, Schlucter J, Ford D, Sodomka P, Simmons L. Partnering with patients and families to design a patient- and family-centered health care system: a roadmap for the future- a work in progress. Maryland: Institute for Family-Centered Care and Institute for Healthcare Improvement; 2006.
Case A, Lubotsky D, Paxson C. Economic status and health in childhood: The origins of the gradient. National Bureau of Economic Research; 2001.
Mikkonen J, Raphael D. Social determinants of health: the Canadian facts. Toronto: York University of Health Policy and Management; 2010.
Wade P. Race, ethnicity and nation: perspectives from kinship and genetics. New York: Beghahn Books; 2007.
Centers for Disease Control and Prevention. Health Disparities and Inequalities Report-United States. MMWR. 2013;62(Suppl 3).
Smedley BD, Stith AY, Nelson AR. Unequal Treatment: Confronting racial and ethnic disparities in health care (full printed version): National Academies Press; 2002.
Cooper LP, NR. Disparities in Patient Experiences, Health Care Processes, and Outcomes: The Role of Patient-Provider Racial, Ethnic, and Language Concordance. The Commonwealth Fund; 2004.
Thomas DM, Biette DN. Canada and the United States: differences that count. Toronto: University of Toronto Press; 2014.
Federal Interagency Forum on Child and Family Statistics: Race and Hispanic origin composition: percentage of US children ages 0–17 by race and Hispanic origin, 1980–2013 and projected 2014–2050. 2014.
Chen AH, Youdelman MK, Brooks J. The legal framework for language access in healthcare settings: title VI and beyond. J Gen Intern Med. 2007;22(Suppl 2):362–7. CrossRef
Civil Rights Act of 1964. In: Title VI, 42 USC § 2000d et seq. United States.
United States. Office of Minority Health. National Standards for Culturally and Linguistically Appropriate Services in Health Care. Washington: Office of Minority Health, US Department of Health and Human Services; 2001.
Executive Order 13166: Improving access to services for persons with limited English proficiency. 2000.
Just the Facts Coalition. Just the facts about sexual orientation and youth: a primer for principals, educators, and school personnel. Washington DC: American Psychological Association; 2008.
Mustanski B, Kuper L, Greene G. Development of sexual orientation and identity. In: Tolman D, Diamond L, editors. Handbook of sexuality and psychology. Washington, DC: American Psychological Association; 2014. p. 597–628.
Haas A, Rodgers P, Herman J. Suicide attempts among transgender and gender non-conforming adults: findings of the national transgender discrimination survey. In.: American Foundation for Suicide Prevention, Williams Institute; 2014.
Grant J, Mottet L, Tanis J, Harrison J, Herman J. Injustice at every turn: a report of the national transgender discrimination survey. District of Columbia: National Center for Transgender Equality and National Gay and Lesbian Task Force; 2011.
Kecojevic A, Wong CF, Schrager SM, Silva K, Bloom JJ, Iverson E, Lankenau SE. Initiation into prescription drug misuse: differences between lesbian, gay, bisexual, transgender (LGBT) and heterosexual high-risk young adults in Los Angeles and New York. Addict Behav. 2012;37(11):1289–93. CrossRefPubMedPubMedCentral
Kosciw JG, Greytak E, Palmer N, Boesen M. The 2013 National School Climate Survey: the experiences of lesbian, gay, bisexual and transgender youth in our nation’s schools. New York: GLSEN. p. 2014.
Levine DA, Committee on Adolescence. Office-based Care for Lesbian, gay, bisexual, transgender, and questioning youth. Pediatrics. 2013;132(1):198–203. CrossRef
Fish J. Heterosexism in health and social care. Basingstoke: Palgrave; 2006. CrossRef
Coleman-Fountain E. Lesbian and gay youth and the question of labels. Sexualities. 2014;17(7):802–17. CrossRef
World Health Organization: International classification of impairments, disabilities, and handicaps: a manual of classification relating to the consequences of disease, published in accordance with resolution WHA29. 35 of the twenty-ninth world health assembly, may 1976. 1980.
Wray R, Agic B, Bennett-AbuAyyash C, Kanee M, Lam R, Mohamed A, Tuck A. We ask because we care: the tri-Hospital and TPH health equity data collection research project report September 2013. Toronto: Toronto Public Health; St. Michael's Hospital, Centre for Addiction and Mental Health; Mount Sinai Hospital; 2013.
Pediatric Data Collection Domains and Sample Practices [ https://mghdisparitiessolutions.files.wordpress.com/2015/10/phec_datacollectiondomainssamplepracticesaugust2015.pdf].
- A patient and family data domain collection framework for identifying disparities in pediatrics: results from the pediatric health equity collaborative
John D. Cowden
Erika J. McMullen
- BioMed Central
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