Leveraging Existing Systems to Support Data Collection. Michael Collins, MS Former CIBMTR IT Director

Transcription

1 Leveraging Existing Systems to Support Data Collection Michael Collins, MS Former CIBMTR IT Director

2 CIBMTR Data Acquisition Systems

3 FormsNet

4 A Growable Network Information System (AGNIS) Hospital Node NMDP Node Data Manager Translate From/To cadsr CDEs Translate From/To cadsr CDEs Hospital System AGNIS AGNIS FormsNet 2 FormsNet Database

5 Cancer Data Standards Repository (cadsr)

6 Why use Metadata? Data processing and effective electronic data interchange rely on: Accuracy Reliability Controllability Verifiability Definition and representation Common understanding between users and owners of meaning The purpose of forming and using metadata is to associate semantic meaning and data value. Common Data Element (CDE): A unit of data for which the definition, identification, representation, and permissible values are specified by means of a set of attributes

7 Data Dictionary (Metadata) Example REDCap Data Dictionary Variable Name Form Name Section Header Field Type Field Label Choices Text Validation Type infus_id Identification Transplant Information text Unique Infusion ID integer key_hsct_dte Identification text Date of HSCT date_ymd key_cibmtr_rcip_id Identification Recipient Information text CIBMTR Recipient ID (CRID) integer key_id_assign Identification radio ID assigned by CIBMTR EBMT OTHR, Other key_rsrch_cnsnt_yn Identification radio Consented for Research? 1, Yes 2, No key_rpstry_cnsnt_yn Identification radio Consented for CIBMTR Related Specimen Repository? 1, Yes 2, No key_gender Identification radio Gender 1, Male 2, Female key_date_birth Identification text Date of Birth date_ymd

8 Challenges with Current Approach Patients are not followed by Physicians at the Transplant Centers Data Managers at Transplant Centers may not have access to clinical notes for Physicians following Patients May have difficulty obtaining or may not even try Not practical for follow-up Physicians to access FormsNet Login frustration (requires infrequently used password and RSA token) Unfamiliar with use of FormsNet Not well integrated with clinical practice Time point-driven (100 day, 6 mo, annual)

9 Other Existing Data Collection Systems

10 REDCap Research Electronic Data Capture

11 REDCap Research Electronic Data Capture Pros Inexpensive (software free) Broad institutional adoption Supports sharing data dictionary Internal and external users Easy to create data collection forms Can be made HIPAA-compliant Supports methods for data exchange Cons Requires login (may be different than institutional login) Requires programmer to automate exchange of data

12 Other Clinical Data Management Systems

13 Other Clinical Data Management Systems Pros Availability at institutions Internal and external users? Electronic Data Capture (EDC) Can be made HIPAA-compliant Might be able to integrate with patient scheduling Cons Cost? o To license o To create EDC forms o To integrate or extract data Institutions may not be using EDC

14 Surveys SurveyGizmo: SurveyMonkey:

15 Surveys Pros Inexpensive Easy to create Can be made HIPAA-compliant Cons Integration requires sophistication Institution may not support

16 Other Software to Consider Remedy Informatics Flexible platform Has integrated with CIBMTR via AGNIS Cloud deployable Costly Customer Relationship Management Manage contacts (e.g., physicians, patients) Can be made HIPAAcompliant Flexible platforms Schedule follow-up

17 Other Software To Consider Secure Encrypt your attachments Secure File Sharing Easily upload data securely to cloud Easily share securely with collaborators Data encrypted on disk and in transit Secure FTP Free servers and clients Encrypt the data between organizations

18 Integration and Automation Using a shared data dictionary (metadata) is essential if using multiple data collection systems to facilitate electronic data exchange Consider integrating with a scheduling system to generate reminders or link to survey or data collection system Automate a method of sending data securely to either CIBMTR via AGNIS or Transplant Center using agreed upon format Integrate with existing, familiar authentication systems Generate reminders or develop reports to monitor data collection

19 Thank you! Michael Collins