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Enrichment sampling for a multi-site patient survey using electronic health records and census data.
Mercaldo, Nathaniel D; Brothers, Kyle B; Carrell, David S; Clayton, Ellen W; Connolly, John J; Holm, Ingrid A; Horowitz, Carol R; Jarvik, Gail P; Kitchner, Terrie E; Li, Rongling; McCarty, Catherine A; McCormick, Jennifer B; McManus, Valerie D; Myers, Melanie F; Pankratz, Joshua J; Shrubsole, Martha J; Smith, Maureen E; Stallings, Sarah C; Williams, Janet L; Schildcrout, Jonathan S.
Afiliación
  • Mercaldo ND; Department of Radiology, Institute for Technology Assessment, Massachusetts General Hospital, Boston, Massachusetts, USA.
  • Brothers KB; Department of Pediatrics, University of Louisville, Louisville, Kentucky, USA.
  • Carrell DS; Kaiser Permanente Washington Health Research Institute, Seattle, Washington, USA.
  • Clayton EW; Center for Biomedical Ethics and Society, Vanderbilt University, Nashville, Tennessee, USA.
  • Connolly JJ; Center for Applied Genomics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
  • Holm IA; Division of Genetics and Genomics, Boston Children's Hospital, Boston, Massachusetts, USA.
  • Horowitz CR; Department of Population Health Science and Policy, Ichan School of Medicine at Mt. Sinai, New York, New York, USA.
  • Jarvik GP; Department of Genome Sciences, University of Washington, Seattle, Washington, USA.
  • Kitchner TE; Center for Human Genetics, Marshfield Clinic Research Foundation, Marshfield, Wisconsin, USA.
  • Li R; Division of Genomic Medicine, National Human Genome Research Institute, Bethesda, Maryland, USA.
  • McCarty CA; Department of Family Medicine and Biobehavioral Health, University of Minnesota Medical School, Duluth, Minnesota, USA.
  • McCormick JB; Biomedical Ethics Program, Mayo Clinic, Rochester, Minnesota, USA.
  • McManus VD; Biomedical Informatics Research Center, Marshfield Clinic Research Foundation, Marshfield, Wisconsin, USA.
  • Myers MF; Division of Human Genetics, Cincinnati Children's Hospital, College of Medicine, University of Cincinnati, Cincinnati, Ohio, USA.
  • Pankratz JJ; Department of Information Technology, Mayo Clinic, Rochester, Minnesota, USA.
  • Shrubsole MJ; Vanderbilt Epidemiology Center, Vanderbilt University, Nashville, Tennessee, USA.
  • Smith ME; Center for Genetic Medicine, Northwestern University, Chicago, Illinois, USA.
  • Stallings SC; Division of Geriatric Medicine, Vanderbilt University, Nashville, Tennessee, USA.
  • Williams JL; Genomic Medicine Institute, Geisinger, Danville, Pennsylvania, USA.
  • Schildcrout JS; Department of Biostatistics, Vanderbilt University, Nashville, Tennessee, USA.
J Am Med Inform Assoc ; 26(3): 219-227, 2019 03 01.
Article en En | MEDLINE | ID: mdl-30590688
ABSTRACT

Objective:

We describe a stratified sampling design that combines electronic health records (EHRs) and United States Census (USC) data to construct the sampling frame and an algorithm to enrich the sample with individuals belonging to rarer strata. Materials and

Methods:

This design was developed for a multi-site survey that sought to examine patient concerns about and barriers to participating in research studies, especially among under-studied populations (eg, minorities, low educational attainment). We defined sampling strata by cross-tabulating several socio-demographic variables obtained from EHR and augmented with census-block-level USC data. We oversampled rarer and historically underrepresented subpopulations.

Results:

The sampling strategy, which included USC-supplemented EHR data, led to a far more diverse sample than would have been expected under random sampling (eg, 3-, 8-, 7-, and 12-fold increase in African Americans, Asians, Hispanics and those with less than a high school degree, respectively). We observed that our EHR data tended to misclassify minority races more often than majority races, and that non-majority races, Latino ethnicity, younger adult age, lower education, and urban/suburban living were each associated with lower response rates to the mailed surveys.

Discussion:

We observed substantial enrichment from rarer subpopulations. The magnitude of the enrichment depends on the accuracy of the variables that define the sampling strata and the overall response rate.

Conclusion:

EHR and USC data may be used to define sampling strata that in turn may be used to enrich the final study sample. This design may be of particular interest for studies of rarer and understudied populations.
Asunto(s)

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Encuestas y Cuestionarios / Selección de Paciente / Censos / Registros Electrónicos de Salud Límite: Adult / Aged / Female / Humans / Male / Middle aged País/Región como asunto: America do norte Idioma: En Revista: J Am Med Inform Assoc Asunto de la revista: INFORMATICA MEDICA Año: 2019 Tipo del documento: Article País de afiliación: Estados Unidos

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Encuestas y Cuestionarios / Selección de Paciente / Censos / Registros Electrónicos de Salud Límite: Adult / Aged / Female / Humans / Male / Middle aged País/Región como asunto: America do norte Idioma: En Revista: J Am Med Inform Assoc Asunto de la revista: INFORMATICA MEDICA Año: 2019 Tipo del documento: Article País de afiliación: Estados Unidos