Question ID: Feb 2-7
Submitted by: February 2, 2011 Clinical and Translational Sciences Provocative Questions Workshop - Submitted to the website
March 3, 2011
What are the principles for design of health information systems that will allow efficient and prospective collection of patient data?
Background: Health information systems are necessary to deal with the overwhelming amount of information being generated in basic, translational, and clinical research, especially in oncology. It is widely recognized that such systems could markedly improve medical decision-making and delivery of health care in the future, and provide a wealth of outcome information, but detailed designs of these systems has not been worked out or tested conclusively.
Feasibility: The US government is encouraging development of information systems that can support rapid-learning, knowledge-based health care systems. Greater use of electronic medical records, new computing principles, and availability of virtual learning technology are helping to design new systems, but the precise methods by which patient data can be appropriately incorporated into such systems, with suitable consent and privacy protections while also permitting appropriate access for research purposes, have not yet been defined. However, the oncology community could help develop such systems, using (for example) patient data originating from cooperative clinical trials groups.
Implications for success: Prospective collection of health information from all patients could enhance medical practice and research in many ways, especially if “information warehouses” were able to offer health care providers with relevant information expeditiously. In optimal systems, patients would be monitored over time and would have access to their own data. In addition, the information system could be used to identify candidates for clinical trials, substantially increasing accrual rates.
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