The City of Hope (COH) IAIMS model is developing the Clinical and Research Integrated Information System (CRIIS). This past year’s progress is summarized by specific aim.

To speed the ascertainment of new cancer cases, an electronic path reporting system was installed and piloted, and a paper on this experience won best paper award in the Journal of Registry Management. To better integrate our clinical care and research data on a regular basis, the Information Technology Services Department has now created a mirror image export of the Oacis Electronic Medical Record (EMR) that is made available nightly to the Division of Information Sciences (DIS). This allows exports of data for cytogenetics, laboratory, and other key testing needed on the research subjects maintained in the clinical research repository, without impeding the operational system for patient care. This represents another key step in the progress towards the Research Data Warehouse, and work will continue over the next several months.

Progress continued to be made on the metadata repository to document data elements from many disparate feeder systems to the warehouse, and a process for reconciling information across multiple systems has been developed. Reconciliation of key data such as vital status has been conducted across the Biostatistics Information Tracking System (BITS) for clinical research data, the Oacis EMR, the Cancer Registry, and the Internet-based National Comprehensive Cancer Network outcomes research system, and verification of information via an external source using the Social Security Death Index has been achieved. This work has yielded important lessons about the best practices for integrating multiple operational systems into a longitudinal store of data.

With the opening of the new Helford Clinical Research Hospital in Fall 2005, the Clinical Trials On-Linesm (http://clinicaltrials.coh.org) system, created and maintained by DIS under the IAIMS grant, will allow the delivery of protocol documents to become completely paperless. Piloting and evaluation of the elimination of paper protocol documents has been ongoing over the past several months with very positive results. Pharmacy drug formulation summaries have been added to the system at the request of nursing, and the search engine for matching patients to available protocols is being streamlined further at the request of the physicians. This level of enthusiasm and requests for enhancements of the system demonstrates the success and diffusion of the system into real practice.

Another critical advance resulting from the IAIMS grant is the transformation of our Graff Medical Library into a virtual electronic portal for information and educational resources. Through the recruitment of Elizabeth Wood as Director, an aggressive program has been created to expand and enhance the library’s information management (IM) resources and services, including an improved library website, enhanced bibliographic search interface, evidence-based practice databases, a “Medical Terminology” course for COH staff and researchers, participation with Nursing Research and Education on a “Research-to-Practice” program for bedside nurses; inclusion of the Patient & Family Resources bibliographic records in the online catalog; and obtaining a $125,000 Graff Foundation award for a turnkey Integrated Library System. Access to databases from the Web of Science was added early in 2004 for improved identification of COH publications and their cited references. Ms. Wood is a Distinguished Member of the Academy of Health Information Professionals. She is currently Chair of the Research Section of the Medical Library Association, and serves on the Editorial Boards of the Journal of the Medical Library Association, Medical Reference Services Quarterly, and The Journal of Consumer Health on the Internet.

Specific Aim 2: Extend integrated information resources beyond the walls of COH.

The Clinical Trials On-Linesm system ontinues to be an invaluable tool to bring patients to COH via information on leading edge treatment options delivered over the Internet, and several enhancements to the system have been deployed over the past year. The Graff Library now provides online access to the full text of over 500 journals and textbooks from any COH workstation, and via VPN for off-site employees; included in these resources are the Cochrane Library and other evidence-based practice databases. The Patient and Caregiver Resource Center provides on-line catalog records for books and videos for educational viewing by staff, patients, and families.

In May 2003 Dr. Niland was the featured speaker at a workshop hosted by the German national cooperative groups for clinical research information systems development. COH will host the German delegation of clinical research informaticists in Spring 2004. We have recently learned that we will be awarded a contract as one of two development sites for the Clinical Trials System Workspace of the National Cancer Institute’s Cancer Biomedical Informatics Grid (caBIG). The caBIG initiative extends the IAIMS principles nationwide, seeking to create, augment and share information management tools and data resources across the nation’s Cancer Centers, avoiding redundancy, facilitating inter-connectivity, and advancing the speed of developing tools for biomedical research. This contract will fund much of the staffing infrastructure that was created for information integration via the IAIMS grant, and assist in building standards-based clinical research tools for use nationwide.

In terms of bioinformatics high-end computing tools and educational resources, over 250 investigators, technicians, and graduate students are now using the shared computational resources of the Systems Biology group on a regular basis, most of which are available via the Internet as well as the COH intranet. (http://informatics.coh.org). Recent highlights for this core resource include the upgrade of the original two-processor server for biosequence analysis and computer-assisted molecular modeling to a new eight-processor server such that the most computationally demanding applications can now be executed on multiple parallel processors at greatly increased speed. In addition 20 laptop computers with wireless network connections have been acquired for deployment as a mobile computer laboratory. In 2003, seven workshops with hands-on computer laboratory sessions were conducted. COH also recently launched a high-throughput proteomics initiative in collaboration with investigators from the Division of Immunology using seed funding from the IAIMS grant. This project is now being funding by development funds from the Cancer Center Support Grant to continue this work. We also purchased and deployed new microarray analysis software, and have been granted two new institutionally funded positions to support our emerging functional genomics research programs.

Educational activities for faculty and staff are ongoing. The library provides monthly classes in literature searching, bibliographic retrieval, and “Introduction to Medical Terminology”. In October 2003 COH organized a workshop on “Information Integration–The Next Frontier” open to participants within the GCRCs nationwide, held in Bethesda with over 100 attendees representing 50 institutions. Training in HL7 and expert consulting in the Reference Information Model (RIM) have been carried out to ensure that our database modeling conforms to international standards, and COH is now an institutional member of HL7.

While the IAIMS Steering Committees continued to meet regularly and provide input and prioritization of our technology resource needs, the CRIIS Executive Committee began to lose its authority over the IM strategic planning process during the past two years, with Executive Leadership becoming less involved. Now that it’s 5 years since the inception of IAIMS implementation, it was decided that an external review and reinvigorated planning process for information management was needed. This review was conducted over the past year with the assistance of the Kurt Salomon and Associates (KSA) consulting group, interviewing over 60 staff, investigators, and administrators. The IAIMS PI and co-investigators participated on the steering committee for this process, culminating in a final report and recommendations. With the arrival of our new CEO, Dr. Michael Friedman, these recommendations were reviewed in early 2004 at an executive leadership meeting. A reconstituted Information Management Steering Committee has emerged as a result, led by our Executive VP for Scientific and Medical Affairs, Dr. Ted Krontiris, with the IAIMS PI, CIO and other key leaders as members.

In addition to this evaluation of our information management, Dr. Joan Ash made a two-day visit to COH in March 2004 to conduct the final evaluation of the IAIMS processes and outcomes. She interviewed 10 key individuals involved in IAIMS throughout the institution, tape-recording oral histories for subsequent analysis. This analysis is underway with assistance from Elizabeth Wood, and will form the basis for a peer-reviewed paper on our IAIMS experiences. In April 2004 Dr. Niland will present at the IAIMS Consortium meeting, participating in a panel on “Making a Successful Transition After IAIMS Funding Ends: Advice from Those Who Have Been There.”

Based on our highly positive experience with both IAIMS planning and implementation, we will be able to contribute that through this process we have revised the information management culture at COH; infused integration as a way of operating for information, systems, processes, and organizational structures; formed a new Department of Biomedical Informatics dedicated to the further support of data integration and management; and become involved in national/international initiatives and standard setting organizations. In addition we have leveraged our IAIMS experience to successfully compete for several externally funded grants/contracts that will allow us to maintain our momentum and continue this critical work during our post-IAIMS period.