Capturing Social and Behavioral Domains in Electronic Health Records: Phase 1 (2014)

Summary

BACKGROUND

Substantial empirical evidence of the contribution of social and behavioral factors to functional status and the onset and progression of disease has accumulated over the past few decades. Traditionally, research and interventions on social and behavioral determinants of health have largely been the purview of public health which has focused on disease prevention and maintenance of the public’s health. Health care systems, in contrast, have focused primarily on the treatment of disease in individual patients, and, until recently, social determinants of health have not been linked to clinical practice or health care delivery systems. Electronic health records (EHRs) provide crucial information to providers treating individual patients, to health systems, including public health officials, about the health of populations, and to researchers about the determinants of health and the effectiveness of treatment. Inclusion of social and behavioral health domains in EHRs is vital to all three uses.

The Health Information Technology for Economic and Clinical Health (HITECH) Act¹ and the Patient Protection and Affordable Care Act² place new importance on the widespread adoption and meaningful use of EHRs. “Meaningful use” in a health information technology context refers to the use of EHRs and related technology within a health care organization to achieve specified objectives. Achieving meaningful use also helps determine

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¹ Public Law 111-5.

² Public Law 111-148.

whether an organization can receive payments from the Medicare EHR Incentive Program or the Medicaid EHR Incentive Program.

The Centers for Medicare & Medicaid Services (CMS) is working with the Office of the National Coordinator for Health Information Technology (ONC) and other parts of the U.S. Department of Health and Human Services to establish regulations for the third stage of the meaningful use incentive program. Meaningful Use Stage 3 is in development and implementation for this stage is expected to start in 2017.

Expansion beyond the traditional medical information collected in EHRs to include social and behavioral health determinants requires the identification and application of criteria for determining what domains should be included in all EHRs and for specific populations. The rapid adoption of EHRs and the exigent Meaningful Use Stage 3 criteria formulation by the ONC and CMS add urgency to this effort.

THE FORMATION AND CHARGE TO THE COMMITTEE

The Office of Behavioral and Social Sciences Research and other institutes of the National Institutes of Health partnered with the Association of State and Territorial Health Officials, Blue Shield of California Foundation, California HealthCare Foundation, Centers for Disease Control and Prevention, CMS, The Lisa and John Pritzker Family Fund, the Robert Wood Johnson Foundation, and the Substance Abuse and Mental Health Services Administration requested that the Institute of Medicine (IOM) conduct a two-phase study. This first report is intended to inform and aid the ONC and CMS in finalizing domains for Meaningful Use Stage 3. The charge to the committee for the project is presented in Box S-1.

In response to that request, the IOM convened a committee of 13 members with a wide variety of expertise, including leaders from the field of health information technology, social determinants of health, behavioral and psychological issues, and measurement.

THE COMMITTEE’S APPROACH TO ITS CHARGE

To meet its charge, the committee first established the rationale for adding social and behavioral determinants of health into EHRs and considered how EHRs may assist providers in their decision making, resulting in improved health outcomes for their patients, regardless of Meaningful Use adoption and implementation. The committee held two information-gathering meetings to clarify its statement of task; learn about Meaningful Use objectives; and hear from other experts in the field, stakeholders, and the public on domains that the committee should consider. (See meeting

agendas in Appendix A.) After each information-gathering meeting, the committee met in closed session to allow for discussion and deliberation.

Before the first meeting and throughout the study process, the committee reviewed relevant literature. Its formal review of the literature focused on identifying peer-reviewed, published literature and reports, evidence-

based reviews from governmental agencies, and previous IOM reports that were germane to the statement of task. For this study, the committee uses the term “candidate” to refer to the “core” domains (the third item of the Statement of Task) because the specific task for the Phase 1 report was to identify domains that should be considered by ONC for Stage 3 Meaningful Use. In this context the core domains are those that are “candidates” for being selected for Meaningful Use. The committee erred on the side of inclusion for its Phase 1 report while also trying to limit the number of candidate domains. Consequently, the committee expects to further winnow the list of candidate domains to a smaller number of recommended “core” domains in the Phase 2 report. Throughout the study, the term “domain” is used to refer to determinants of health, which could include health conditions that, in turn, influence other health outcomes.

DOMAINS AND CRITERIA

Several existing conceptual frameworks identify categories of health determinants and the ways in which they link to mortality as well as to disease onset and progression. These models generally distinguish individual-level characteristics (such as biological factors, emotional and cognitive traits, and health-related behaviors) from features of the context in which they emerge and operate (i.e., the physical and social environment). The committee reviewed a number of existing frameworks and selected three that it used in developing an outline of domains for the committee to review (see Chapter 2) as an initial step in identifying domains to be considered for inclusion in all EHRs.

The committee then decided on the following criteria for domains to be given a high priority for inclusion in EHRs:

1. Strength of the evidence of the association of the domain with health.³

2. Usefulness of the domain, as measured for

a. The individual patient for decision making between the clinician and patient for management and treatment;⁴

b. The population to describe and monitor population health and making health care–related policy decisions that affect the popu-

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³ The committee supports the concept of the World Health Organization’s definition of health being a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity. This definition was not originally included in the committee’s Phase 1 report.

⁴ After publication of the Phase 1 report, edits were made to criteria 2.a., to clarify that decision making is between a clinician and a patient, and to criteria 5, to clarify that sensitivity includes legal risk.

    lation cared for by the particular health system or as a whole; and

c. Research to conduct clinical and population health research to learn about the causes of health, the predictors of outcomes of care, and the impact of interventions at multiple levels.

3. Availability and standard representation of a reliable and valid measure(s) of the domain.

4. Feasibility, that is, whether a burden is placed on the patient, the clinician and the administrative time and cost of interfaces and storage.

5. Sensitivity, that is if patient discomfort regarding revealing personal information is high and there are increased legal or privacy risks.

6. Accessibility of data from another source (i.e., information from external sources may be accessible to meet the needs of patient care, population health, and research; if so, the domains would have less priority for inclusion in the EHR).

The committee then worked to narrow the domains in the outline to a smaller number using the first two criteria through a consensus process. The result reduced the number of domains constituting the candidate set for which the committee found sufficient evidence of relevance and utility to consider for inclusion in all EHRs. Given the limited time that the committee had to complete the Phase 1 report in order for its recommendations to be useful for Meaningful Use Stage 3 deliberations, it was not possible to apply the full list of criteria to all of the potential domains before these decisions had to be made. Next, having developed the candidate set, the committee will undertake a fuller evaluation of those domains to achieve a smaller set of recommended domains. This evaluation, which will entail applying the remaining four criteria to the domains, will be reported on in the committee’s next report. The committee understands that ONC and CMS will likely need to move forward with their decision making on objectives and measures for Meaningful Use Stage 3 before release of the committee’s Phase 2 report. Chapter 3 of the current report and the criteria presented above are intended to serve as resources to support their drafts and final decisions.

COMMITTEE’S KEY CONCLUSIONS

Identification of a candidate set of domains relevant for all individuals and specific populations was central to the committee’s deliberations. While the committee did not identify any specific populations or settings for selected candidate domains, measures for these domains will be identified

TABLE S-1 Summary of Selected and Non-Selected Domains

in its Phase 2 report and these may be tailored to specific populations, as guided by use of the life course perspective.

The committee’s conclusions are listed in Table S-1. Of note, the committee opted to include domains even if they are already routinely captured in EHRs to ensure that they will continue to be prioritized and to allow recommendations for standard measures for these domains as part of the committee’s Phase 2 report. The domains are not listed in order of priority, but instead, are organized by the order of the committee’s initial outline, which ordered domains in terms of types of data they represented.

^a The Phase 1 report originally identified the domain as “nicotine use and exposure” but subsequently changed the domain to “tobacco use and exposure.”

^b The original publication in Phase 1 had several editorial errors in the labeling of domains/subdomains. The report has been updated to correct the errors.

DOMAINS NOT INCLUDED

In narrowing the initial outline of domains, the committee was faced with challenging decisions that were guided by awareness of the need to identify the domains for which evidence on the association with health outcomes was available and that there would be some utility in having the information in EHRs. Most of the domains excluded from this candidate set simply lacked an adequate evidence base to support routine capture of these data. By limiting the recommended domains to those for which there is a reasonable evidence base, the committee is confident that the list of domains and the measures that follow in the committee’s next report, if implemented, will provide crucial data to providers, health systems, and researchers, in turn providing the most appropriate strategies toward improving the health status of Americans.

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