Individual organizations are progressing in their approaches to the development, management and use of integrated data repositories (IDRs) as a means to support a broad array of research, according to survey results from research published online March 21 in the Journal of the American Medical Informatics Association .
Sandra L. MacKenzie, MBA, from Scripps Health Information Services in San Diego, and colleagues developed a web-based survey and deployed it to 46 national Clinical and Translational Science Award (CTSA) centers to evaluate trends in IDR implementation and use to support research between 2008 and 2010. Thirty-five organizations completed the survey resulting in a 74 percent response rate, representing 28 CSTAs and the National Institutes of Health Clinical Center.
“Overall, the 2010 CTSA IDR survey shows a growing prevalence of IDRs and provides insight into the evolving characteristics of IDRs supporting clinical research at a selection of major academic health centers,” the report stated.
Eighteen of 28 institutions (64 percent) reported having an IDR in 2008. By 2010, 30 of 35 (86 percent) indicated their organization had one or more clinical data repositories. Seventeen of 35 (48 percent) considered their IDR to be a dedicated research data repository. Thirteen of 35 overall (37 percent) contained data from multiple institutional entities, with five of those 13 designated for research only.
Four of 35 (11 percent) reported having multiple repositories. Of those four, only one institution described the multiple IDRs as designated for research only. Responses of rough estimates of patient populations (22 of 35) varied widely, from ‘43,000 unique patients’ to 10 million.
“As CTSA organizations have built or expanded their data access capabilities, they have also increased their use of de-identification capabilities,” wrote the authors. In the 2010 IDR survey, 55 percent (16 of 29) of organizations indicated they are utilizing automated de-identification of patient-level data (either while data is loaded to the repository or during data access). Of the organizations with clinical text notes in their IDRs, 33 percent (7 of 21) indicated they include text clinical notes in their automated de-identification processes.
The survey asked respondents to identify challenges experienced in deploying and maintaining these systems. Funding and gaining sponsorship/stakeholder buy-in were the top reported development obstacles (23 percent), followed by data ownership and access issues (17 percent) and staffing (13 percent).
“The results have already proven to be of value to members of our working group with specific questions such as how other institutions allow non-aggregated, patient-level access to identified data, including protected health information,” concluded the authors. “We see the survey results as providing an evolving map of characteristics and issues encountered in the large-scale development of IDRs in the U.S. As a resource, we hope that it will provide a basis for further research in clinical research informatics, as well as identification of opportunities for enhanced resource sharing and collaboration.”