"Significant federal investment has led to the increased use of electronic health record (EHR) technology and electronic exchange of health information across health care providers. Health information exchange organizations (HIOs) are organizations that provide technology and infrastructure to enable electronic health information to be exchanged across disparate EHR technologies and between different health care provider organizations. While designed to support patient care delivery, this technology has the potential to support clinical research and improve efficiencies for data collection including patient identification and data monitoring. This study sought to determine whether HIOs have the necessary infrastructure, technological capacity and agreements among participating providers to support research using exchanged clinical data; if HIOs facilitate the development of multi-institutional datasets that can be used for research; and whether the application of HIO data (Indiana Network for Patient Care, INPC) resulted in an accurate, representative, and comprehensive foundation for a specific research question (transitions of care in intracerebral hemorrhage, ICH, patients). Our scoping review to identify published studies that used HIOs as data sources for clinical research found that, outside of the evaluation of HIOs themselves, HIO data were being used to a limited extent in clinical research studies, with only a limited number of specific HIOs involved in generating the majority of the published research. We then used data from a national survey of HIOs to determine the extent HIOs report supporting research by allowing exchanged patient data to be aggregated and used for clinical, health services or epidemiologic research. We found that most HIOs reported supporting, or planning to support research, and that support for research is closely aligned with advanced technological infrastructure and functionality. This study culminated in the use of data from one HIO, the INPC, to study transitions of care for ICH patients. We found that the HIO's ability to provide sufficient data to study transitions of care was hindered by two problems: 1) missing clinical data among providers that share data with the INPC and the lack of participation in the INPC for several important post-acute care settings. Most notably, the INPC data did not include encounter information from hospice providers, free-standing acute rehabilitation facilities, skilled nursing facilities (nursing home), home health, or long term care hospitals. For some of these settings (e.g. skilled nursing facilities and home health), this is in part due to the slow implementation of electronic health record and exchange technologies. In addition, we found that encounters are collapsed into broad categories (inpatient, outpatient and emergency) that do not reflect the variety of clinical interactions in a way most useful to researchers and other analysts of healthcare delivery. As the rapid expansion in EHR use and health information exchange are relatively recent, HIO support for research is still developing. While we found limited utility of HIO data to study transitions of care for ICH patients, we only used data from one specific HIO. Additional research is required to determine whether HIOs are viable partners for research outside of the evaluation of HIOs themselves."--Pages ii-iii.
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