Survey Documents Readiness
for Managing Treatment Outcomes Data
A survey of transplant center resources for collecting, storing, retrieving and transmitting data on treatment outcomes has been completed by the ASBMT Quality Outcomes Committee.
“The survey documents that some centers have substantial information technology resources, but others will need to work closely with their IT department or personnel to develop a more robust IT infrastructure and capabilities,” said Dr. Roy Jones, chair of the committee. An invitation to participate in the survey was sent to 261 centers, and 206 centers responded.
Among the results:
· 85% of responding centers store hematopoietic cell therapy (HCT) data electronically.
· Half of the centers with electronic storage capabilities use StemsoftR, and half use a proprietary system and database that is either desktop- or server-based.
· Two-thirds of centers report data electronically both inside their institution and to outside entities.
· 90% of centers have already developed plans to submit data electronically to the CIBMTR and NMDP.
· The majority of centers have access to computer network managers, programmers and database administrators to assist in the data management and transmission process.
· 70% of centers have access to server-based databases such as Oracle or SQLServer, and virtually all of these centers plan to develop databases using these products to store outcome and research data.
· 70% of centers have expertise in mapping data between databases.
· 40% of centers plan to create interfaces between their HCT database and other electronic data resources within their institution.
Half of responding centers said they would be interested in a national conference on treatment outcomes data management and reporting. Planning is under way for such a conference in early 2008. The conference is intended to help IT and administrative staff plan for and implement the most cost-effective data management solutions.
The ASBMT Quality Outcomes Committee has been discussing methods to help blood and marrow transplant centers comply with a new law that requires the reporting of comprehensive allogeneic stem cell transplant outcomes to the Stem Cell Transplant Outcomes Database (SCTOD). This requirement, along with the ASBMT recommendation that similar outcome data be reported for autologous transplants, places substantial new burdens on centers for data acquisition and transmission.
The committee, together with the Center for International Blood and Marrow Transplant Research (CIBMTR) and the National Marrow Donor Program (NMDP), has determined that electronic data acquisition, recording and transmission are essential to data collection for the SCTOD and offers centers the best opportunity to efficiently collect and disseminate data. Enhanced IT solutions can help ensure accurate data collection and transmission, reduced data burden through development of “enter once use often” data approaches, and better research opportunities.
FormsNetTM 2.0, a web-based tool designed by the NMDP to submit data directly to the CIBMTR and the NMDP, is undergoing final testing for introduction later this year. Many centers plan to leverage this tool and an updated StemsoftR product, combining them with local solutions, to achieve greater efficiencies in data management.
A complete report on the survey of IT resources at transplant centers is being prepared for publication.