emerge Network: CERC Survey Survey Sampling Data Preparation

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1 emerge Network: CERC Survey Survey Sampling Data Preparation Overview The entire patient population does not use inpatient and outpatient clinic services at the same rate, nor are racial and ethnic subpopulations represented proportionately. Using the clinic population as a pool of potential survey participants, random sampling will likely predispose the survey results to primarily reflect the opinions of an older, sicker, and whiter portion of the populace. We will use demographic and geocode-based data to develop a stratified sampling scheme to enable greater representation from demographic groups less likely to come to clinic and who are less often studied. The Sampling Strategy Workgroup will centrally develop a sampling plan for use by the entire Network based on patient-specific demographics data combined with data from the 2012 American Community Survey (ACS) that will be sent by the sites to the CC. Population definitions Adult populations All patients who have had at least one inpatient or outpatient clinic visit at one of the participating sites, between October 1, 2012 and October 1, 2014, who were at least 18 years old on January 1, 2015, who have a valid home address in the United States of America, and who are not known to be deceased. Pediatric populations Parents of all patients who have had at least one inpatient or outpatient clinic visit at one of the participating sites, between October 1, 2012 and October 1, 2014, who were less than 18 years old on January 1, 2015, who have a valid home address in the United States of America, and who are not known to be deceased. Data transfers There will be four population data transfers relevant to the sampling strategy: two transfers from the site to the CC and two transfers from the CC to the site. The first data transfer corresponds to the pilot study and will be used, in part, to identify all challenges. The second will be on a relatively short timeline and will be used to identify participants for the survey itself. Data transfer #1 (May 1, 2014 June 30, 2014) Site à CC:

2 Sites will send the CC data on their entire population of patients who are qualified to participate in this study, but will limit the inclusion date of the most recent clinic visit to October 1, 2012 May 1, Data transfer #2 (September 1, 2014) CC à Site: The CC will return the population data to the sites but with two added columns: 1) Pilot Sample (0=No; 1=Yes) and 2) Pilot Survey Version (1=1, 2=2, 3=3, NA=Not applicable). Pilot Survey Version number will be randomly assigned within sampling strata. Data transfer #3 (November 1, 2014 November 15, 2014) Site à CC: Sites will update the population datasets using the entire date range October 1, 2012 October 1, It will contain updated information (including updated age, geocode and other data) for those who were included in data transfer #1 as well new patients observed between May 1, 2014 and October 1, Data transfer #4 (January 15, 2015) CC à Site: The CC will return the population data to the sites but with two added columns: 1) Full Survey Sample (0=No; 1=Yes) and 2) Full Survey Version (1=1, 2=2, 3=3, NA=Not applicable). Version number will be randomly assigned within sampling strata. Data transfer protocol All data transfers will occur via Data Hippo ( which is an easy to use, encrypted, data transfer protocol. If you have problems contact Nate Mercaldo and Jonathan Schildcrout Process description 1. Send Data to CC Send the CC a csv file that contains the demographic variables and the census-derived variables at the block group level (see Data to be sent to the CC below). The table will have N rows where N is the number of unique patients. Please use the variable names (case-sensitive) provided below, but please DO NOT include the GEOID variable in the dataset. See DemographicsExample.csv for an example file that should be sent to the CC. 2. CC will create sampling strata The CC will cross-tabulate the demographic data at each site. The cross-tabulation will involve the following stratification variables: age, sex, race, ethnicity, urban/rural (census block group), median income (census block group), and educational attainment for adults

3 at least 25 years (census block group). For patients with missing race or ethnicity, we will define strata using the race and ethnicity information at the block group level. 3. Sampling Strategy Workgroup Develops Sampling Plan The CC will work with the sampling strategy working group to develop a sampling plan. The sampling scheme will consider the availability of demographic subpopulations that are of interest across the network when developing the sampling strategy. The goal of the sampling strategy is to develop the simplest approach (i.e., fewest sampling strata) that will permit adequate representation of subpopulations of interest. This can only be detailed after demographic data are observed. 4. Data Returned to Site After the sampling plan has been identified, the CC will return the population data to the sites as described above in Data transfers. Data to be sent to the CC The following is a data dictionary for the demographics dataset that is to be joined with both the block group based census data (including urban/rural) and the ACS five-year summary file estimates. The CC created a national shapefile and state-specific shapefiles that include all relevant census and ACS data. Join the following demographics dataset with the shapefile. The datasets are to be joined by the block group variable, GEOID. Important note: Do not include GEOID in the file that is sent to the CC. Variable format Definition Name id character(10) Patient identifier: The first two characters correspond to the emerge site id. age Patient age on January 1, 2015 rounded to the nearest year or if that cannot be calculated please indicate how it was calculated. sex character(1) M =male, F =female, O =other, U =unknown race character(2) Patient race. Include race categories that are at least as finely detailed as those listed in NIH Planned Enrollment Report.docx (in the dropbox folder). Attach a detailed and comprehensive data dictionary. If there are multiple recorded races in the EHR, please use the most recently documented one. ethnicity character(1) Hispanic or latino: Y =yes; N =no; U =unknown. If there are multiple recorded ethnicities in the EHR, please use the most recently documented one. biobank Is the patient a participant in the biobank?: 1 = yes; 2 = no (declined participation); 3=unknown

4 monthyear character(7) Month and year of the most recent inpatient or outpatient contact with the EMR. Format: mm/yyyy. If month/year cannot be provide, please provide season/year where seasons are defined as Spring=March-May, Summer=June-August, Autumn=September-November, Winter=December- February. For example, if the most recent inpatient/outpatient visit is 10/2013, then the corresponding season/year value is Autumn/2013. AddressID character(7) This variable should be coded in such a way that each unique street address can be identified. Patients who live at the same street address should receive the same AddressID. Patients who live in different apartments at the same street address should receive the same AddressID. HouseholdID character(7) This variable should be coded in such a way that each unique household can be identified based on the street address and possibly the apartment number. Patients who live at the same street address but in different apartments should receive different values for HouseholdID. GEOID Census block group: a 12 digit concatenation of state (2 digits), county (3 digits), census tract (6 digits), block group (1 digit). Not to be confused with GEOID_1 and GEOID_TIGR. geocodable Geocodability of address: 0 = address geocodable (e.g., nonhospital address), 1 = address not geocodable (e.g., due to a messy address), and 2 = address unknown (e.g., hospital address). geoaccuracy Geocoding accuracy score: a value between If the address is not geocodable, then NA. The following is a data dictionary of the census and ACS shapefiles that are to be joined with the demographics dataset. If you would like a data dictionary for the ACS five-year summary tables, see ACS2012_5-year_TableShells.xls in the dropbox folder. Additionally, see the document emergegeocodedata.docx in the dropbox folder if you want to understand how the census and ACS shapefile was developed. Finally, see shapefile_download_instructions.docx for instructions on how to download state-specific and country shapefiles. Variable format Definition Name GEOID Census block group: a 12 digit concatenation of state (2), county (3), census tract (6), block group (1). Not to be confused with GEOID_1 and GEOID_TIGR. LSAD10 75=urbanized area (50000 or more), 76=urban cluster (2500 to 50000), missing=rural. From the 2010 Census urban and rural classification and urban area criteria.

5 B19013_001, B19013A_00, Through B19013I_00 B03002_001 through B03002_021 B15002_001 through B Median household income overall and by race / ethnicity (White alone, Black or AA alone, Am Indian / Alaska Native alone, Asian alone, Native Hawaiian / Other Pacific Islander, Some other race alone, Two or more races, White alone not hispanic or latino, hispanic or latino) for the census block group. Table B19013 from the 5-year estimate summary file (ACS ) Number overall and of each race (White alone, Black or AA alone, Am Indian / Alaska Native alone, Asian alone, Native Hawaiian / Other Pacific Islander, Some other race alone, Two or more races, White alone not hispanic or latino, hispanic or latino Two races including some other race, two races excluding some other race / three or more races) by ethnicity (Hispanic, not hispanic) combination within the census block group. Table B from the 5-year estimate summary file (ACS ). Number of each educational attainment group (no schooling, nursery to fourth grade, 5 th and 6 th, 7 th -8 th, 9 th, 10 th, 11 th, 12 th with no diploma, HS grad/ged/alternative, some college less than 1 year, some college one or more years and no degree, associates degree, bachelor s degree, masters degree, professional school degree, doctorate) by gender combination within the census block group for those who are 25 or older. Table B15002 from the 5-year estimate summary file (ACS ).

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