Data Management Services
ATHN brings together standardized data elements into one dataset—without identifying information. ATHN protects data quality, privacy, and security of the data set and awards funding for data management support.
The ATHNdataset will facilitate research to help improve care and support advocacy efforts on behalf of patients with bleeding and clotting disorders. Data can also be easily exported to fulfill UDC surveillance and MCHB reporting requirements.
Data Quality Self-Audit
The Data Quality Self-Audit is a process by which an HTC validates the data collected using WebTracker. The self-audit process is designed to ensure quality data for the ATHNdataset and other studies. As defined by ATHN’s Data Quality Committee, the self-audit assesses:
- Completeness, i.e., whether a data element is recorded and present in the database; and
- Accuracy, i.e., whether the data element is accurate when compared to a source document such as the patient’s chart.
Data quality self-audits have been developed and pilot tested for data elements that include demographic information used to create the Unique Patient Identifier and diagnosis fields. Medication and Inhibitor self-audits are in development. The Committee recommends that someone other than the person who entered the data conduct the self-audit. A random sample of cases should be selected for the audit. Recommended sample size is a minimum of 20 patient records or 10% of the treatment center’s patient community, whichever is larger.
Standardized Data Elements include:
- Primary blood disorder
- Family history
- Laboratory test results
- Routine care and trauma
- Types of bleeds and infusions
Financial Support for Data Management
ATHN has committed to developing a process for evaluating and providing financial support for data management at the local level. This will ensure that all treatment centers can contribute to a robust and accurate database. ATHN will support quality and consistency of data on a national level through HIPAA privacy- and security-compliant data management policies, procedures, training programs, and support.
- ATHNdata.quality.counts. In 2008, ATHN launched ATHNdata.quality.counts. The program funds data management at ATHN Affiliate treatment centers. ATHN is in its fourth round of funding data management to build and strengthen capacity at the local level. To date, more than $3 million of support has been awarded to 60 treatment centers. Interim and annual reports of awardees provide insight into best practices and barriers to data management.