The Feasibility of Using Electronic Health Data for Research on Small Populations. Summary and Conclusions


Relative to other federal data sources like surveys and claims databases, as well as paper charts, electronic health records have some major strengths. These include: the potential to reach larger samples of individuals, perhaps in some cases approaching the majority of the population or subpopulations of interest; the inclusion of many types of clinically rich, detailed information; the potential inclusiveness and longitudinality of some data sets; and, the ability to link EHR data to other data sources, including patient self-reported information on a variety of issues such as behavior, functioning, or health status and other outcomes. Additionally, the change in medium from paper and pen to computer hard ware and software facilitates the identification, extraction, and sharing of data on a scope, scale, and speed heretofore not possible. Finally, ARRA HITECH funding has stimulated more providers to adopt and use EHRs and ongoing efforts in this area and implementation of health reform is likely to give providers additional incentives to invest in and use EHRs.

While some significant barriers remain, many of the conditions required for harnessing the power of EHRs for a research on the health and health care needs of the American people and key small n populations are present or closer to being realized. Our interviews and literature review illustrate that innovate solutions are being developed through a variety of publicly supported and private efforts. Moreover, these innovative solutions provide concrete examples of how thorny governance, privacy and security, technical, and other barriers might be overcome. They also allow for a “cataloging” of lessons learned from various approaches and potential next steps.

Toward that end, interviewees and our own thinking result in a number of possible suggestions for moving the field forward. They can broadly be described as additional “environmental scanning” to identify promising approaches, convening of HHS agencies and possibly other groups via a public-private partnership framework to identify possible next steps and their prioritization, support for targeted EHR method and data project or specific research projects using EHR data alone or in combination with other data, and strategic planning and coordination within HHS on ways to proceed in the shorter and longer term.

For example, the research for this report has identified some of the major recent efforts in various HHS departments that have touched on the potential use of EHR data for research, implicitly or explicitly. However, we have not had the opportunity to fully catalogue or mine these programs for “lessons learned.” A more comprehensive and detailed identification and mining of innovative examples would be potentially very valuable to the field.

Similarly, we have identified and spoken with the leaders of some of the major federal and/or private research efforts to date and gotten some opportunity to get their thoughts on key areas for further work. Additional input will be gathered from a sub-set of them serving as TEP members. However, a broader group of researchers with complementary and diverse areas of expertise could be convened to weigh in on priorities and next steps. In addition, other major stakeholders such as provider and professional associations could be convened to discuss the issues that the use of EHRs for research as well as operations and related issues (i.e., quality and efficiency improvement) raise. EHRs are currently used for ongoing care and operations, and it is not clear whether and to what extent providers and professionals understand how they can help ensure that such data are useful for research and what might motivate them to become more engaged in and invested in improving the data for ongoing research. In other words, what is the business case for providers and professionals to engage in and/or participate in research that uses EHRs and/or what conditions would make them more interested and able to do so.

As noted above, interviewees identified specific projects that could be pursued. While some of these projects could be described more as EHR data and methods projects, such as EHR data validation studies or studies related to the strengths and weaknesses of different database approaches, others are more focused on particular priority target population or small n population and their health and health care needs. However, right now, many federal funding solicitations do not explicitly call for projects that innovate with respect to EHR data and methods and/or attempt to use it for research for research on specific priority populations.

Finally, drawing on the first two general steps, HHS could develop a broad plan for moving the field forward and/or specific mechanisms and projects that could be pursued to leverage the investments already made in EHR infrastructure, methods, and research. Given the potential scope a scale of the efforts needed, as well as the need to involve a variety of private organizations (e.g., health plans, organized delivery systems) in these efforts, it can be very difficult to determine where to begin and some pathways and mechanisms to facilitate progress. However, it seems clear that a locus of leadership and coordination of effort would be helpful in and of itself. There are pockets of substantial activity but currently no clear organization, department, or mechanism for pulling these pieces together within HHS or between HHS and other potential private partners, particularly with respect to the use of EHR data for research. This is clearly loci of leadership for other areas related to EHRs, such as CMS and ONC for the adoption and use of EHRs to improve quality and efficiency, and private organizations (e.g., health plans, organized delivery systems, vendors, professional associations) are highly engaged and involved in that process. Perhaps there could be an equivalent effort around the use of EHR data for research, which pulls together clinical and health services and policy researchers, key federal agencies, and other private organizations.

In sum, EHRs hold great promise to advance research on a number of topics and populations, particularly small n populations. Although there are numerous barriers, the adoption and use of EHRs is increasing fairly rapidly for many reasons, including ARRA HITECH and health reform and there is tremendous energy and enthusiasm in pockets of the research community about ways to further harness EHRs for research. This report has identified and described some prior federal efforts and related projects, ways they are working to overcome these barriers, and general next steps. Further work will be done by the TEP to identify more specific areas and possible priority areas and ways these general approaches could be more concrete and actionable by HHS alone or in some cases in conjunction with private partners such as foundations and/or associations or networks of major health plans, organized delivery systems, and professional associations.

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