Electronic health records and other types of electronic health information have the potential to revolutionize the health and health care research enterprise. In addition to creating a source of rich information about large numbers of people (so-called “big data”), the electronic medium offers faster and cheaper means of accessing, extracting, linking, and using health data for a variety of purposes, such as quality and efficiency improvement and research. For example, EHRs and other information technology can be used to identify target patient subpopulations and provide information for research databases.
EHR-based data may be useful for research on small populations that may differ from the majority in ways that affect their health and that have been difficult to study with traditional methods and data sources such as federal surveys and claims data. General surveys often include too few people from particular demographic or clinical subpopulations for production of valid and reliable results, and they face limits in the amount and type of information they can collect. Claims data may not provide needed clinical detail and may be distorted by the purpose for which it was created (i.e., to obtain payment).
The second part of the report explores the potential use of EHRs and other electronic data sources to improve research on small populations that have been difficult to study. While “research” can take many forms, we define the term broadly in this report, as our primary purpose is to consider how EHR data can potentially be used to study the health and health care needs of small populations as illustrated by the four subgroups, including making comparisons to the larger population or other subgroups as needed. As described in Part I of this report, the priority research questions of interest about small n populations are varied, including topics traditionally addressed through clinical, pharmaceutical, health services, public health, public policy, and evaluation research. EHR data, alone or in combination with other forms of data, may be better suited for some purposes than others. Additionally, increasing interest in quality improvement provides opportunities to harness EHR data for research on small n populations but may also present some challenges. We discuss the issue of the “fit” between the purpose and nature of the research on small n populations and the potential use of EHR data further throughout this report.1
We continue to use our four example small populations to illustrate both the potential and the challenges in using EHR and other electronic health data for research in Part I of this report. This part is organized around the conditions needed to conduct EHR-based research on small populations, describing both barriers and facilitators.