For electronic health records to help solve the challenges of conducting research on small n populations, several conditions need to be present. The first is a critical level of adoption of relatively advanced EHRs by a range of providers (e.g., primary care physicians, specialists, hospitals, laboratory, and pharmacy) so that information about sufficient numbers of “small n” populations will be included. The second is having EHRs that not only support day-to-day patient care work, but that contain information that is sufficiently valid and reliable to support research. The transformation of information in EHR systems into databases that are of research quality requires extensive validation work. Experience in carrying out the needed quality control work is accumulating, as we will discuss below. Also critical is the ability to exchange the data within and across organizations, which requires both interoperability and the infrastructure for exchanging data. There are other conditions that must be met—such as systems to ensure the consent, privacy, and security that facilitates the sharing and use of the data while maintaining consumers’ and patients’ participation and trust—which we discuss later in the report. Here, we focus on aspects of these first three conditions and how recent legislation and health reform is facilitating more widespread adoption and use of EHRs and information exchange. While all of these conditions may not yet be fully in place among providers that treat small populations, it is important to begin thinking about research capabilities and infrastructure needs as the availability of these data are growing. In this report, we have reviewed the work of those who are on the cutting edge of using EHR data for research as a guide to understanding what may be more widely feasible in the future, and to provide lessons on how current challenges can be overcome in using this type of data for research on small populations.
The Health Information Technology for Economic and Clinical Health Act (HITECH) became law in 2009 as a part of the American Recovery and Reinvestment Act. HITECH made an estimated $27 billion available to enable eligible health professionals and hospitals to adopt, implement, or upgrade EHRs to achieve the “meaningful use” of HIT, as defined by the Office of the National Coordinator (ONC). The intent of meaningful use standards is to improve quality and efficiency of care through widespread implementation and use of EHRs among providers participating in the Medicare or Medicaid EHR payment incentive programs administered by the Center for Medicare and Medicaid Services (CMS). Meaningful use is defined through the regulatory rule-making process in three stages, ultimately resulting in a set of criteria for how EHRs must be used. As of August 2013, 56 percent of registered eligible professionals and 77 percent of registered eligible hospitals had received payment for meeting the meaningful use criteria.227
The HITECH legislation also established the Regional Extension Center (REC) and state health information exchange (HIE) programs.228 A total of 62 RECs provide technical assistance to “high priority” providers (e.g., physicians in small practices) to help them implement EHRs and achieve meaningful use. The HIEs work to facilitate data exchange among care providers within a region through a number of mechanisms.
The CDC’s National Ambulatory Medicare Care Survey (NAMCS) provides the best information about the extent of physician adoption of EHRs. Based on an expert consensus, NAMCS defines a “basic” EHR system for physicians as having the electronic capability for managing patient demographic information, patient problem lists, patient medication lists, clinical notes, and orders for prescriptions, and for viewing laboratory and imaging results.229 In 2012, NAMCS estimates show that 40 percent of office-based physicians used an electronic medical or health record (EMR/EHR) that met the criteria of a basic system, up from 22 percent in 2009 (a 48 percent increase).230 Earlier multivariate analysis results indicate that primary care physicians are more likely than other physicians to adopt and use EHRs, and that those practicing in large groups, in hospitals or medical centers, and in the Western region of the United States were more likely to adopt and use EHRs relative to their respective counterparts.231
Regarding EHR adoption in hospitals, in 2008, the ONC started funding an annual IT survey by the American Hospital Association. In 2012, approximately 44 percent of non-federal acute care hospitals reported having EHRs that meet the criteria of a basic system, defined as having a set of eight clinical functions (patient demographic information, patient problem lists, patient medication lists, discharge summaries, lab and radiologic reports, diagnostic test results, and orders for medications) deployed in at least one hospital unit.232, 233 This was an increase from 16 percent in 2009.234 Small, public, and rural hospitals were less likely than larger, private, and urban hospitals to have a basic EHR system. Similar—or slightly better—adoption patterns were found on a recent survey of children’s hospitals.235
Data related to health information exchange among hospitals and physicians is limited. Estimates from the AHA indicate that few hospitals are using EHRs to exchange health information: only 11 percent of hospitals reported in 2010 that they exchange key clinical information with other providers.236 However, a recent study found that hospitals’ exchange of health information with other providers and hospitals outsider their organization has increased by 41 percent since 2008.237 A recent survey estimates that approximately 15 percent of children’s hospitals exchanged health information electronically.238 Data are not available about the extent of health information exchange among office-based providers.
Despite the significant progress toward adoption of EHRs by physicians and hospitals, a significant number of obstacles have presented themselves. Barriers identified in recent review of some 60 publications included design and technical concerns, ease of use, interoperability, privacy and security, costs, productivity, familiarity and ability with EHR, motivation to use EHR, patient and health professional interaction, and lack of time and workload.239 Implementation challenges were reported among all types of users (e.g., public, patients, providers, and managers), but particularly among small, public, and rural providers.240
In sum, HITECH has provided focus and a major “spark” for the adoption and use of EHRs and the exchange of health care information, and considerable progress has been made. Additional incentives for the adoption and use of EHRS came from provisions of the Affordable Care Act (ACA) and include value-based purchasing, patient centered medical homes (PCMHs), and accountable care organizations (ACOs). Some geographic areas and types of provider or organized delivery systems that serve small n populations have reached a tipping point of having sufficient EHR adoption and exchange capacity to support research on some small population. Below, we discuss in further detail what kinds of information is or is not readily available in current EHRs and the implications for research on small populations.