On the gpc-dev call tomorrow, UTHSCSA would like to review and receive comments on the following plans for collecting the obesity survey results. For reference:
#379: Link EHR data to Health and Medical Research Family Survey (HMRFS) 2 results<https://informatics.gpcnetwork.org/trac/Project/ticket/379> #404: How to export and collect non-identifying fields from the HMRFS REDCap survey?<https://informatics.gpcnetwork.org/trac/Project/ticket/404> We assume that local study coordinators will probably bear responsibility for verifying completeness and de-identification of survey data, and gpc-dev teams may assist with exporting/uploading to GPC-REDCap. Because the breakdown of work may differ across sites, we are supporting this effort on both the gpc-dev call/listserv and the regular weight/height call/listserv. Goals: 1) To collect all data in GPC-REDCap by early December (except UW Madison, hopefully by end of Dec) 2) To ensure all data uploaded to GPC-REDCap is de-identified Each site should do the following: 1) Make sure all responses, bounce backs, etc. are recorded in REDCap project "tracker form" 2) Review & edit data dictionary to ensure tracker form fields containing HIPAA identifiers<http://www.atlanta.va.gov/Docs/HIPAA_Identifiers.pdf> are flagged as such. At UTHSCSA we had to add a. pat_age b. mailaddress2 3) Make sure the identifier flag is removed from the following tracker form field a. patient_num - this should be a de-identified patient number needed to link extracted EMR data (SQLite data builder files) 4) Eyeball data in tracker form text fields to ensure no HIPAA identifiers<http://www.atlanta.va.gov/Docs/HIPAA_Identifiers.pdf> are included a. At a minimum check these fields: i. contact_type ii. match_type iii. first_con_atmpt_res iv. survey_contact_method v. survey_contact_person vi. comment_1 vii. comment_2 viii. comment_3 b. Example: at UTHSCSA, during survey tracking we sometimes stored phone numbers in comment_1 & comment_2, so we marked them as identifiers in the data dictionary 5) Make sure any changes to the REDCap data dictionary to mark identifier fields are promoted from draft mode into production 6) Export raw data a. Project Home > Export Data b. On the row "All data (all records and fields)", click the "Export Data" button c. Select CSV / Microsoft Excel (raw data) d. Check the box to "Remove all tagged Identified fields" e. Check the box to "Export survey identifier field and survey timestamp field(s)" f. Click the "Export Data" button, and save the file g. Review it for missing essentials or present identifiers. We recommend using several reviewers please. Clean up as necessary. h. Upload this file to the GPC-REDCap project: "Weight/Health Survey Data Federation", form: "REDCap Data Raw" 7) Export data dictionary - this is needed to interpret the raw data as sites may have made localizations a. Project Setup, scroll down to the bottom of the page and click "Data Dictionary" button b. Click the link to "Download the current Data Dictionary" c. Upload this file to the GPC-REDCap project: "Weight/Health Survey Data Federation", form: "REDCap Data Dictionary" Outstanding Issues: 1) Does the age of survey respondent, which was voluntarily collected as part of the survey protocol, constitute PHI? If so, can we still collect this as a limited data set? For assistance, questions, and comments, please contact: David Rupert Data System Coordinator, Pediatrics-Endocrinology Email: [email protected] Phone: 210-567-5283 ---- Angela Bos Clinical Informatics Research Division Department of Epidemiology and Biostatistics UT Health Science Center at San Antonio Phone: (210) 562-4074
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