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Hersh W, Totten A, Eden K, et al. Health Information Exchange. Rockville (MD): Agency for Healthcare Research and Quality (US); 2015 Dec. (Evidence Reports/Technology Assessments, No. 220.)
This publication is provided for historical reference only and the information may be out of date.
Results of Literature Searches
Results of the literature search and selection process are summarized in the literature flow diagram (Figure 2). Database searches resulted in 5,211 potentially relevant citations. After dual review of abstracts and titles, 849 articles were selected for full-text review. After dual review of full text articles, 136 studies were included. Data extraction and risk of bias assessment tables for included studies are available in Appendixes F and I.
Description of Included Studies
Of the 136 studies included in this review, two randomized controlled trials (RCTs) described in three papers and 32 observational and survey studies addressed Key Questions 1, 2, and 3, pertaining to the effectiveness of improving clinical, economic, population, and intermediate outcomes. Most were conducted in the United States, although eight were from Europe, Canada, Israel, and South Korea. Most studies reported clinical or public health process, economic, or population outcomes, while no studies reported harms of health information exchange (HIE). The majority were assessed to be of low risk of bias but also contained low-quality, mostly retrospective evidence. We identified 58 studies that addressed Key Question 4, pertaining to the use of HIE. The majority were conducted in the United States and were low risk of bias or could not be rated due to study design. Twenty-two studies were identified that addressed Key Questions 5 and 6, pertaining to usability and facilitators and barriers to use. Most were assessed to be of moderate risk of bias and were conducted in the United States, Austria, and Australia. A total of 52 studies addressed Key Questions 7 and 8, related to HIE implementation and sustainability. These studies used varying types of qualitative methods; for those that could be assessed for risk of bias, most were found to have a high risk of bias.
Key Question 1. Is HIE effective in improving clinical, economic, and population outcomes?
Key Question 2. What harms have resulted from HIE?
Key Question 3. Is HIE effective in improving intermediate outcomes such as patient and provider experience, perceptions, or behavior; health care processes; or the availability, completeness, or accuracy of information?
Key Points
- HIE has been studied in far fewer places than it has been implemented, resulting in a research literature skewed toward a relatively small number of sites.
- Although the potential uses of HIE are broad, most studies reported on narrow questions, such as reduction in test ordering or consultations, and not larger overall clinical and financial impacts. Furthermore, most of these studies were conducted retrospectively, making cause and effect difficult to ascertain.
- The strength of evidence for HIE in improving clinical, economic, or population outcomes was low.
- Most studies also reported positive results, raising concerns about publication bias.
Detailed Synthesis
We identified 34 studies that assessed some sort of outcome from HIE use (Table 1). Mapping to our original Key Questions, a total of 26 studies were deemed to report clinical (intermediate), economic, or population outcomes (Key Question 1), while eight were found to report on perceptions of outcomes (Key Question 3). However, no studies evaluated primary clinical outcomes from HIE (e.g., mortality and morbidity - Key Question 1), and none explicitly assessed harms (Key Question 2). Additionally, some studies reported outcomes for more than one of the outcomes in the Key Questions. For these reasons, we present the results of Key Questions 1 through 3 together below.
The most common study design for assessing outcomes was retrospective cohort, typically with HIE use associated with some specific outcome factor.39-56 The next most common design was survey, which was usually focused on perception of outcomes.57-64 Two studies were RCTs, one of a particular directed information exchange (2 published papers, 1 on clinical outcomes65 and the other on perceptions66) and the other of a clinical decision support intervention using data from an HIE implementation.67 Two studies used cross-sectional analyses of large databases to compare those having access to HIE with those without access.68,69 Two other studies used a case series methodology, one of which involved asking clinicians if HIE access avoided undesirable resource use, and then calculating the costs saved70 and the other that retrospectively analyzed data to determine duplicative testing averted.71
The identified studies were performed mostly in the United States, but we identified eight studies from five other countries (Austria,62 Canada,65,66 Finland,46,61 Israel,41,72 and South Korea63). Of the 26 U.S. studies, three assessed multiple HIE implementations in two states (1 study)69 and the entire country (2 studies).64,68 The remaining 23 studies were conducted (1 study per State unless otherwise noted) in Colorado,50 Indiana (3 studies),42,49,59 Louisiana,47 Massachusetts,60 Minnesota71, North Carolina,67 New York (6 studies),45,51,55-58 Oklahoma,48 South Carolina,70 Tennessee (3 studies),39,40,44 Texas,54 Virginia,43 and Wisconsin (2 studies).52,53
The number of studies and their locations in the United States represent a small fraction of those reporting to be operational, sustainable, or innovating according to the eHealth Initiative Annual Data Exchange Survey, which reported a total of 84 such HIE implementations in 201373 and 106 in 2014.74 In other words, while a substantial number of HIE implementations exist in the United States, only a small number have been subject to evaluation. This low number of studies relative to HIE efforts also makes it difficult to generalize factors about aspects of them, such as location, HIE type, and setting, with results of research.
In Table 1, we present the results of these studies by outcome category, classifying the study's geographic location, health care setting, HIE type (query vs. directed), and general direction of the results. Due mainly to study design and performance or reporting limitations, and the lack of ability to combine results, the strength of this body of evidence was rated as low.
With the exception of two RCTs (in 3 publications) and one other study with a prospective design, most studies used retrospective designs, usually with an approach examining the association of HIE use with one or more clinical variables. All of these studies focused on the direct effect of HIE, usually in reducing resource use or costs, without determining its larger impact (e.g., overall total or proportion of spending in an emergency department [ED] vs. the total dollar amounts that HIE appeared to save). None of the studies analyzed individual episodes of care to determine clinical appropriateness of possible changes brought about by HIE use.
The prospective studies also had limitations. The RCTs were focused on highly specific uses of HIE, namely directed exchange of ED reports in one and pharmacotherapy clinical decision support in another. Of note, however, was that neither study showed benefit of HIE. The other prospective study was limited by methodology of physicians self-reporting of resources not utilized when HIE was used, with no followup or validation of their decisions, or analysis of more holistic views of clinical outcomes or costs.
While most of these studies had reasonable internal validity, questions of external validity remain, especially since the intervention (HIE) was only one of many potential influences on clinical outcome (i.e., many more factors go into clinical outcomes than the decision to consult an HIE system on a patient). As a result, most studies with appropriate retrospective methods are listed as having low or moderate risk of bias due to their proper internal validity but there are still significant concerns about external validity.
Improving Resource Use
Laboratory Testing
Six studies addressed laboratory testing, with five finding a benefit of HIE in reducing overall tests, although estimates of impact on cost were mixed.44,46,50,52,70,71 Four of these studies took place in the ED setting, all showing some aspect of reduced testing and cost savings. Two studies found overall reduced laboratory testing, with one reporting an odds ratio (OR) of testing among patients for whom HIE was accessed to be 0.880 (95% confidence interval [CI], 0.828 to 0.935)44 and the other noting 23 percent fewer lab testing procedures (statistical significance not reported) in a propensity-matched group of patients for whom HIE could have been used.52 A third study logged physician self-reports of laboratory testing averted with use of HIE in the ED, with savings over 3 months of $462 calculated from tests reportedly not ordered.70 A fourth study found 96 instances of duplicate lab testing averted in 1,488 patient encounters that were retrospectively analyzed.71Two studies were conducted in ambulatory settings, against a backdrop of increased overall laboratory testing. One U.S. study found that after HIE implementation, there was a reduction in the rising rate of testing, without overall cost savings.50 In contrast, a study in Finland found increased laboratory testing during the period of HIE implementation (19.0% for primary care physicians and 7.0% for specialist physicians per total patient appointments).46 As with all retrospective studies, the four studies of laboratory testing could have been complicated by confounders, while the prospective study did not validate physician self-reporting of tests avoided or measure overall costs of care for the ED encounter or subsequent utilization.
Radiology Testing
Nine studies assessed radiology testing, with all but one reporting an association of reduced testing with HIE.39,40,44,46,50,52,69-71 Six of these studies also examined laboratory testing and are described previously,44,46,50,52,71,75 and three additional ED studies assessed only imaging.39,40,69
The ED studies showed a variety of findings. One study found that for all radiologic imaging, there was reduction of head computed tomography (CT) imaging, (OR of 0.913, 95% CI, 0.842 to 0.991) as well as body CT imaging (OR 0.886, 95% CI, 0.828 to 0.948) but no significant changes in echocardiogram, chest x-ray, or ankle x-ray testing across 12 EDs.44 Another study demonstrated 22 percent decreased diagnostic radiology ordering and 52 percent reduced CT scan ordering (statistical significance not reported) when HIE was used in the ED.52 Two additional studies assessed neuroimaging for headache39 and repeat imaging for back pain in EDs.40 For neuroimaging, HIE usage was associated with decreased diagnostic imaging (OR 0.38; 95% CI, 0.29 to 0.50) and increased adherence to evidence-based guidelines (OR 1.33; 95% CI, 1.02 to 1.73), although there was no significant change in overall costs. HIE usage was associated with reduced repeat imaging for back pain (OR 0.36; 95% CI, 0.18 to 0.71), but no change in cost due to higher use of CT scans with HIE access. A prospective case series study reported $161K in savings over 3 months through averted radiologic testing in EDs,70 while a retrospective case series found 453 duplicate radiology testing in 1,488 patient encounters retrospectively analyzed.71
One cross-sectional study looked at repeat imaging in the ED in two states (California and Florida), finding reduced probability of repeat CT (-8.7%; 95% CI, -14.7% to -2.7%), ultrasound (-9.1%; 95% CI, -17.2% to -1.1%), and chest x-ray (-13.0%; 95% CI, -18.3% to -7.7%) ordering in hospitals that had HIE participation as reported in the Healthcare Information and Management Systems Society Analytics Database of hospital information technology (IT) functionality.69
In ambulatory settings, one U.S. study showed no statistically significant reduction in the rate of radiologic testing.50 However, a Finland-based study showed a reduction in radiologic testing (16.4% reduction for primary care physicians and 11.0% reduction for specialist physicians).46
Hospital Admissions
Eight studies assessed the role of HIE in reducing hospital admissions, with inconsistent findings.41,44,53,54,56,65,70,72 Two studies (described above) found a reduction in hospital admissions and lower costs using methods previously described. The bulk of the $1.07 million annual savings due to HIE found in one study resulted from reduced admissions.44 Another study also reported $118K in savings from averted admissions over a 3-month period.70 Two studies in an Israeli health maintenance organization found that viewing the medical history via an electronic health record (EHR) decreased possibly redundant admissions, with even greater reductions when information was accessed using HIE.41,72 A study in New York found that viewing information reduced odds of admission (OR 0.70; 95% CI, 0.52 to 0.95).56
Other studies, however, found no benefit from HIE in terms of avoiding hospital admissions. An RCT of directed HIE in Canada providing family physicians electronic reports of ED visits versus paper-based reports resulted in no difference in hospital admissions or return visits to the ED.65 Other studies found that HIE was associated with increased admissions for ambulatory-sensitive diagnoses54 and a 28 percent increased rate of admissions, although such admissions had reduced length of stay with 771 fewer bed days per 1,000 health plan members over 16 months.53
Two studies assessed HIE in reducing hospital readmissions. One study found that assessing information in an HIE implementation was associated with reduced odds of hospital readmission (OR 0.43; 95% CI, 0.27 to 0.70)55 while another found that U.S. hospitals participating in HIE in 2007 did not have lower readmission rates for acute myocardial infarction, pneumonia, or heart failure.68
Referrals and Consultations
Two studies, described previously, assessed HIE for reducing referrals and/or consultations. The prospective ED case series reported reduced consultations, leading to savings of $3,990 over 3 months.70 The Finland-based ambulatory study, however, found that HIE was associated with increased referrals by primary care physicians (43.6%) and specialists (12.8%).46
ED Cost
Another two studies addressed reducing overall ED costs per patient, with both finding reductions when HIE was available. One study found that an HIE system encompassing 12 EDs resulted in net annual savings (total savings minus operating costs) of $1.07 million, with reduced hospital admissions accounting for 97.6 percent of the reduction.44 Another study found that for a propensity-matched group of patients for whom HIE could have been used, the group for whom HIE was used had $29 per ED visit less expenditures.52 Neither study reported overall ED expenditures, making it unknown what proportion of overall ED spending was impacted by HIE.
Public Heath Reporting
Three studies assessed HIE in public health settings, all of which were conducted in the United States.42,47,49 Two examined the completeness of notifiable disease reporting data. One study compared usual (“spontaneous”) public health reporting with automated lab reporting through the HIE, finding a 4.4-fold higher rate of reporting for the HIE-based approach, with cases identified an average of 7.9 days earlier.49 The other study showed equal or improved completeness of reporting for a variety of data fields in notifiable disease reports, although completeness was reduced for some fields (e.g., laboratory units of measure, normal range, and abnormal flag) due to inadequacies in the clinical data entering the HIE.42 Another study found that a public health HIE led to increased identification of needed followup care of 419 HIV patients and 85 percent of them having actual followup care.47
Quality of Care
Three studies looked at the value of HIE in improving quality of care in ambulatory settings.45,48,67 One study assessed a benchmark group of clinical quality measures believed to be amenable to HIE usage among users and nonusers of an HIE portal. Users of the portal had a higher proportion of physicians exceeding mean clinical quality measure performance at baseline (57% vs. 48%) that increased after the HIE became available (64% vs. 49%), with the increase for portal users before and after availability of the HIE statistically significant (p<0.001).45 An RCT of HIE data used in a clinical decision support intervention was able to detect medication adherence problems in eight categories of drugs but did not show any benefit in improving adherence by patients in taking medications prescribed based on evidence-based guidelines.67 Another study of six physician practices found improved documentation and delivery of preventive services for mammography screening (21.1% to 57.1%, p<0.01), colonoscopy screening (31.7% to 53.8%, p<0.01), pneumococcal vaccine administration (39.1% to 50.6%, p<0.01), and influenza vaccine administration (22.7% to 41.7%, p<0.01).48 The study also found that medication reconciliation completion improved from 35.3 percent to 44.9 percent (p<0.001).
Other Aspects of HIE
Three studies assessed other aspects of HIE. One study found a 30 percent reduction in evaluation time for Social Security Disability claims.43 Another found that HIE data led to a 20.3 percent increase in identifying frequent ED users compared with site-specific data.51 An additional study focused on hospital-based HIE, finding that communication and satisfaction (based on the Hospital Consumer Assessment of Healthcare Providers and Systems survey) were higher in hospitals that implemented HIE compared with those that proposed to implement HIE.64
Although the risk of bias in most studies was low, the resulting evidence from them was mostly of low quality. This low strength evidence mostly favored the value of HIE in reducing resource use and costs, especially in the ED. However, these studies used mostly retrospective designs that cannot account for how HIE was used and its impact on the overall care of the patient beyond the immediate setting where it was used.
Perceptions
A number of studies evaluated clinician or patient perceptions of HIE (Table 2).57-64,66 Three studies assessed clinician perceptions of HIE in the ED setting. One study followed up an RCT on the provision of an electronic versus mailed report after an ED visit,65 with family physicians reporting improved patient management and followup in ED settings. 66 Another study also found that primary care physicians reported enhanced awareness and improved communication and followup with primary care physicians after ED admission/discharge.57 An additional study found that providing pharmacy information to physicians in the ED improved knowledge and gaps but was not felt to reduce time or be worth the cost.60
Other studies assessed perceptions in the outpatient setting. Two studies found that HIE was perceived to improve ambulatory care function, resulting in faster acquisition and treatment decisions61 and improved care and decreased work for filing and archiving discharge reports that were sent.62
Some studies looked at specific aspects of HIE. One study found that physicians were more satisfied with electronic lab reports than with paper-based reports.59 Another queried physicians on push versus pull HIE, with respondents reporting satisfaction with both, although more so with push over pull.58 An additional study assessed patient satisfaction when records were transferred via HIE, finding it to be improved over patients delivering paper records themselves.63
Clinician perceptions of the value of HIE, where studied, were generally positive. How such perceptions translate into improved care is unknown. This body of evidence was of low strength.
Factors Associated With Outcomes
To determine whether effectiveness of HIE varied by location, health care setting, or outcome type, we rated each study outcome by whether HIE was found to have some beneficial effect or not. As shown in Table 3, the preponderance of studies showed that HIE use for different functions, in various settings, and of varying types was mostly positive. While the number of positive versus negative studies was not an indicator of the overall direction of the evidence, we did note that for each “negative” study, there is at least one “positive one. For “Type of HIE,” there was no clear pattern of findings to suggest that one type is clearly better than another, even indirectly. The two RCTs we found were described in three papers. Two of these reported outcomes, one for each RCT, both of which showed no benefit for the HIE intervention.65,67 A perceptions study of one of the RCTs found perceptions of improved patient outcomes and their management.66 These are in contrast with the observational study designs where 96 percent found beneficial effects of HIE. This is somewhat typical in comparing RCT and observational study results, likely due to confounding. For HIE setting, only ambulatory and ED have enough studies to evaluate patterns, with outpatient settings less likely to find beneficial results compared with studies in ED settings, but again based on indirect comparisons only. The sparseness of studies across geographic settings does not allow for identification of patterns, although across most studies in the United States, the findings were positive.
Key Question 4. What are the current level of use and primary uses of HIE?
Key Points
- More than three-quarters (76%) of non-Federal acute care hospitals electronically exchanged laboratory results, radiology reports, clinical care summaries, and/or medication lists with any outside providers in 2014. This represented an 85 percent increase since 2008 and a 23 percent increase since 2013. Close to seven in 10 hospitals (69%) electronically exchanged health information with ambulatory providers outside of their organization, representing a 92 percent increase since 2008 and a 21 percent increase since 2013.
- A variety of HIE models are employed across settings. Hospitals and ambulatory care providers both provide and use data; while laboratory services provide data and community clinics use data. At least 50 percent of these organizations are reaching an advanced stage of use of core functionalities; many supporting health care reform initiatives and advanced analytics.
- Use varies by type of health care professional, with higher use by nurses and clerks, when compared with physicians. Patient engagement remains low.
- Use is increasing in ambulatory care practices, with a 2013 estimate of 38 percent of practices using HIE. Characteristics of higher HIE use being larger practice size, practice owned by a health system (vs. physician owned), and multispecialty (vs. single specialty) practice.
- HIE use in long-term care settings is low (<1%), with the consistent pattern of nonprofits enjoying wider use than for-profit entities. Less than four in ten residential care facilities that use EHRs also exchange health information.
- Results of regional and statewide studies that evaluate HIE use in inpatient, outpatient, community clinic, or EDs suggest that HIE is used for few patients; the extent of HIE use is low. Results of international/multi-national studies suggest the same finding.
- HIE use was in its infancy in the 2000s but has been steadily increasing since then.
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A recently released 2015 report from the ONC suggests that the United States is making great progress in exchanging health information.
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HIE is particularly useful in the ED and in the ambulatory setting to alert providers to inpatient or ED events recently experienced by patients.
- Patients also seem willing to consent to data exchange, as long as the benefits of doing so are clear to them.
Detailed Synthesis
We identified 58 studies that described the levels of use and primary uses of HIE (Tables 4-7). Several methods were used by investigators to answer questions about HIE use, including surveys (25 studies),25,26,73,74,76-96 analyses of HIE audit-logs (13 studies),40,45,54,97-106 retrospective database analyses (9 studies),107-115 and mixed methods (7 studies).116-122 Two studies used focus group methods,123,124 one study used time-motion methods,61 and another used geo-coding.125
Over one-half of the studies (30 of 58) analyzed HIE implementations over a regional or statewide area,45,54,76,77,83-86,88,90,92,96-106,112,118-120,123-126 while an additional 15 evaluated HIE use nationally.25,26,78-81,87,91,93,107-111,113 Of those that evaluated use regionally or over a statewide area, 10 studies evaluated HIE implementations in the State of New York,45,76,77,96-98,102,106,112,125 five in Texas,54,101,103-105 five in Tennessee,40,86,99,118,119 two in Indiana,88,92 and two in Minnesota.85,90 Five studies evaluated HIE in a single State (Massachusetts,123 North Carolina,100 Wisconsin,84 Northeastern Ohio,120 and Louisiana124).
Two studies evaluated HIE use across integrated delivery systems. One exchanged data between the Department of Veterans Affairs (VA), the Department of Defense (DoD), and non-Federal care organizations,116 and the other between the VA and Kaiser Permanente.82 Seven studies evaluated HIE use outside of the United States61,89,94,114,115,121,122 and two in multiple countries including the United States.95,117
The majority of studies evaluated HIE use across inpatient and ambulatory care settings. Seven studies were limited to evaluations of HIE use in hospitals,76,88,96,107,108,111,117 three of these used data from the American Hospital Association (AHA).107,108,111 Four studies evaluated HIE use that involved exchange of data with nursing homes or residential care facilities; two using data from the National Nursing Home Survey and the National Survey of Residential Care Facilities,93,113 the other two using data from New York State.77,112 Three studies focused on evaluating HIE use in the ED; all of these exchanged data regionally.40,99,100 Two studies focused on evaluating HIE use in office settings using data from the National Ambulatory Medical Care Survey,91,110 three others used within State data, one from Indiana92 and two from Minnesota.85,90
The majority of studies assessed overall use of the HIE, while two assessed the use of HIE for repeated imaging in the ED,40,102 and two evaluated HIE for prevention or tracking of infections.83,88
Twenty-seven studies included data collected in 2010 or more recently;25,26,73,74,77,83,88,90-98,102,106,108-113,120,124,125 the majority of studies used data collected in 2009 or earlier. Fifteen studies used a query-based HIE;40,54,86,97-99,101-105,118-120,125 the other studies either did not specify, or multiple HIE implementations were included.
Twenty-nine of the studies were rated as being at low risk of bias;25,26,40,54,76-81,83,86,88,91,93,94,100,101,103-105,107-111,113,121,125 nine at moderate risk of bias;84,85,90,92,95,96,102,112,122 six at high risk of bias;61,87,89,114,117,120 and fourteen were not rated due to the type of study design (data from audit-logs or qualitative studies).45,73,74,82,97-99,106,115,116,118,119,123,124
Level of Use and Primary Uses: Type of HIE
The majority of the studies used a variety of types of HIE, and did not describe these in detail. Data describing the type of HIE, according to the classification system promulgated by the Office of the National Coordinator (direct, query-based, or consumer-mediated) were limited to studies wherein a specific HIE was evaluated. Of these, query-based HIE systems were noted for evaluations of the MidSouth e-Health Alliance (MSeHA),40,86,99,118,119 the Central Texas HIE (I-Care),54,101,103-105 the Health Care Efficiency and Affordability Law for New Yorkers Capital Grant Program (HEAL-NY),97,98,102,125 and the Northeast Ohio Public Health Care System.120
Level of Use and Primary Uses: Health Care Settings and Systems
This summary of HIE use by health care setting and systems (Key Question 4b) has been combined with the summary by IT system characteristics (Key Question 4c), and data sources (Key Question 4d) to provide the summary below. Little meaningful information was found on the use of HIE by provider type (also Key Question 4b) so, when available, this information is also incorporated into this section.
Participation in HIE, Types of Data Exchanged, Characteristics of Successfully Participating Organizations (United States–Wide Surveys)
Six studies used survey methods to investigate the frequency of data exchange and types of data exchanged across regional health information organizations (RHIOs) across the United States (Table 4).25,78-81,87 Across these studies, between 138 and 207 organizations met the definition of a RHIO; while between 20 and 81 RHIOs provided data. These data, collected from 2006 through 2012, suggest that entities most commonly providing data are hospitals (83%), followed by ambulatory settings (60%); and that the entities most commonly receiving data were ambulatory settings (95%), followed by hospitals (83%), public health departments (50%), and payers (44%).81 Using survey data collected in 2007, Hessler, et al. focused on the exchange between RHIO and State and local public health departments, and found that of 138 public health agencies, 50 (36%) had no RHIO in their jurisdiction; 16 (12%) had no relationship with a RHIO, and 26 (40%) were exchanging information. Twelve of 20 RHIOs were exchanging information; seven of these (35%) with public health entities.87 The types of data most frequently exchanged were laboratory test results (84% to 90%),78,81,87 inpatient data (70%), medication histories (70%), and outpatient data (60%).78,81 In 2008 and 2009, of 75 operational RHIOs, covering 14 percent of U.S. hospitals and 3 percent of ambulatory practices, only 13 supported the criteria for meaningful use criteria of the Health Information Technology for Economic and Clinical Health Act (3% of hospitals and <1% of ambulatory practices),79 while by 2012, there had been a 61 percent increase in the number of operational RHIOs, from 75 to 119.25
Two additional surveys were conducted by the eHealth Initiative 73,74 One-hundred, ninety-nine of 315 identified HIE organizations completed the 2013 annual survey. These HIE entities were a mix of community-based, State-based, and health care delivery organizations. Results indicate there is no single dominant model of HIE. Ninety organizations use a ‘Direct’ standards-based protocol for securely exchanging data, mostly for transitions in care. Patient opt out was the most common consent model, although patient engagement remains low amongst organizations exchanging data. Eighty-four organizations had reached an advanced stage of operation or innovation; most took 2 years to become operational. Among organizations that responded in both 2011 and 2013, 27 more had reached stages 5 (operating), 6 (sustaining), or 7 (innovating) on the eHealth Initiative's maturity scale, in 2013. Hospitals and ambulatory care providers are the stakeholders most commonly providing/viewing data; independent laboratories also commonly provide data. Community and public health clinics commonly view data. HIE organizations are focusing on functionalities to support health care reform initiatives and advanced analytics.
The number of HIE organizations identified and that responded in 2014 was lower than in 2013, with 126 of 267 identified responding in 2014.74 Again, there was a mix of community-based, State-based, and health care delivery organization-based HIE entities responding. Data were provided by hospitals, ambulatory care providers, laboratories, and community/public health clinics. Data were accessed by ambulatory care providers, hospitals, community/public health clinics, and behavioral or mental health providers. Findings suggest an 11 percent increase over 2013 in the proportion of organizations that have reached stage 6 (operating) or higher (106 organizations). Uses of HIE included support for an accountable care organization to improve patient outcomes, for a patient centered medical home, for a State Innovation Model, and for a bundled payment initiative. Results suggest data exchange is reaching a point of stability and acceptance, and that organizations are settling on a set of core services offerings.26
Nine studies investigated HIE use retrospectively, using U.S.-wide survey data collected for other purposes, with an information technology add-on.26,91,107-111,113 Four of these used data from the AHA,26,107,108,111 two from the National Ambulatory Medical Care Survey, (NAMCS),91,110 and one each from the Commonwealth Fund Health Policy Surveys,109 the National Nursing Home Survey/National Survey of Residential Care Facilities,111 and, another from the National Survey of Residential Care Facilities.93
These studies investigated overall participation in HIE use. Results suggest that HIE use by hospitals has risen from 11 percent (2009)78 to between 30 percent and 58 percent more recently.108,109,111 Results from the recently released ONC brief suggest that more than three-quarters (76%) of non-Federal acute care hospitals electronically exchanged laboratory results, radiology reports, clinical care summaries, and/or medication lists with any outside providers in 2014. This represents an 85 percent increase since 2008 and a 23 percent increase since 2013. Close to seven in 10 hospitals (69%) electronically exchanged health information with ambulatory providers outside of their organization, representing a 92 percent increase since 2008 and a 21 percent increase since 2013.26 Characteristics associated with higher use are nonprofit status, presence of an EHR system, larger market share, and larger practices.107-109,111 Results from the NAMCS (2011) suggest that the majority of office-based physicians reported being able to both send and receive data; 64 percent of these exchanges were through an EHR vendor and 28 percent through a hospital system. Activities included viewing laboratory results and incorporating these into the EHR, and exchanging clinical summaries with patients. Primary care providers were more likely to use HIE than specialists.91 Results from the NAMCS (2013) suggest that 39 percent of office-based physicians reported having HIE capability with other providers or hospitals. Characteristics of higher HIE use were larger practice size, practice owned by a health-system (vs. physician owned), and multispecialty (vs. single specialty) practice.110 Data from the National Nursing Home Survey (2004) and the National Survey of Residential Care Facilities Survey, both from the Centers for Disease Control and Prevention, indicate that HIE use in these settings is low, with the consistent pattern of nonprofits enjoying wider use than for-profit entities.113 Finally, recent data from the National Survey of Residential Care Facilities suggest that 23 percent of residential care communities that use EHRs also exchanged health information. Nearly 25 percent could exchange with pharmacies and 17 percent with physicians.93
Transfer of Records Between Integrated Delivery Systems
The VA and DoD use the Virtual Lifetime Electronic Record (VLER) system for eHealth exchange with the private sector, in the Nationwide Health Information Network (NwHIN) – a ‘network of networks’. This is a federated, pull (query-based) model for transfer of records between integrated delivery systems, using an opt in consent approach by patients. The NwHIN allows users to pull in data from other organizations (Table 5). In an early study, Bouhaddou et al. investigated the transfer of records across three integrated delivery systems in San Diego, California; the VA, DoD, and Kaiser Permanente Southern California. They found that 264 of 363 of patients (73%) who opted in and provided valid authorization could be correlated across integrated delivery systems.82 In a recent, much larger study, Byrne et al. enrolled 12 sites. Of the 64,237 veterans who provided authorization and opted in, less than 0.01 percent opted in and subsequently opted out. The proportion of data matched between exchange partners ranged from 12 percent to 88 percent. The highest matching rates were accomplished using social security numbers in the matching algorithm. Data were retrieved for 2,724 unique VA patients with the exchange partner, and for 1,764 unique VA providers reviewing exchange partner data.116
Participation in HIE and Extent of Use: Regional or Statewide Initiatives
Nine studies described the use of HIE in the State of New York. Five of these used audit logs,45,97,98,102,106 two used surveys,76,77 one used a database of clinical data,112 and one geo-coding125 (Table 6). Most of the HIE implementations are query-based. The studies of audit logs indicate frequent queries,97,98 and an increasing proportion of physicians accessing HIE over time (33% to 43% over 18 months).45 Separately, of 63,305 patients enrolled from three hospitals, an average of 238 clinical event alerts were provided per day to notify ambulatory care providers of inpatient or ED admissions for their patients; a total of 42,818 events were detected over a 6-month timeframe.106 Primary HIE users varied by study. In one study, primary users were non-clinical staff in the outpatient setting and clinicians in the inpatient setting,97 while in another, 86 percent of sessions were with staff in an ED.102
Abramson et al. conducted three statewide surveys in New York, two in 205 hospitals76 and the other in 632 nursing homes.77 In each, they investigated participation in HIE and the exchange of data. In hospitals, their results suggest that between 2009 and 2012 the percent of respondent hospitals participating in HIE and exchanging data, increased from 23 percent to 79 percent. In 2012, institutions exchanged data more frequently with other hospitals (71%) and ambulatory care providers (69%), than with long-term care facilities (45%) and home health agencies (38%).96 Among nursing homes 54 percent participate in HIE, with 31 percent of providers exchanging information outside the system. HIE use was highest when nursing homes had an EHR. The types of data exchanged were pharmacy (42%), labs (39%), and hospital data (39%). The seventh study was a retrospective database analysis of clinical data that described a geriatric care coordination program that used a Clinical Event Notification system to request information from nursing homes when patients were seen in the ED.112 The authors suggested that use of the Clinical Event Notification functionality may have facilitated avoidance of 18 percent of hospital admissions, as these admissions lasted less than 48 hours. As not all studies described the type of HIE in detail, we were unable to draw any conclusions based on the type of HIE utilized. Finally, using a novel study design, Onyile et al. estimated the proportion of patients in the New York Clinical Information Exchange (now Healthix) system by mapping the most current zip code for each patient to the appropriate U.S. county. They found that 88 percent of patients in the system live within 30 minutes of New York's Times Square.125
A series of five studies investigated HIE use in a query-based Central Texas HIE. I-Care is an HIE implementation comprised of hospital systems, public and private clinics, and governmental agencies operating federally qualified health centers.54,101,103-105 Four of these studies were conducted across several facility member sites, with a fifth study across two sites.101 For adult patients seen in the ED, use was low; in 57 percent of patients54 and only 2.3 percent of encounters.105 In a subset of two sites that did not have an EHR (but that mandated use of the HIE), the HIE was accessed in 21 percent of the encounters.101 Across these studies, HIE use was higher for those with a greater number of ED visits and hospitalizations,54,101,105 older age, a greater number of chronic conditions,101,105 females, and those with fragmented care.101 HIE use was lower for blacks and Hispanics, visits for alcohol use, injury, poisoning, an unfamiliar patient, and a busier than average day.105 Similar results were found in the study that focused on children seen in the ED; use was greater for those less than 1 year old, who had more frequent encounters in the past, and a greater number of diagnoses. Use was lower if the patient was unfamiliar, or if the day was busier than average.104 In a companion study that investigated how use of HIE varies by job type and organization in an indigent care setting, Vest et al. found that the most frequent users were those whose positions were administrative, followed by social services, physicians, nurses, public health professionals, and pharmacy professionals. The hospital was the workplace for 50 percent of users, followed by adult ED, ambulatory care, public health agency, mental health agency, and children's ED. Most clinical access took place in the ED and in public/mental health agencies. In the majority of use sessions, users accessed the system in a minimal fashion; almost all use was administrative.103
Of the five studies conducted in the MSeHA, based in Memphis, Tennessee, three used audit-logs,40,99,118 one was a cross-sectional survey,86 and one used mixed methods.119 MSeHA is an HIE implementation that facilitates data exchange across EDs and community-based ambulatory clinics. In 2007, across these studies, HIE use was low, being used for 12.5 percent of the study population.40 In another, HIE was viewed in the ED for between 3 percent and 10 percent of visits.99 In a third, HIE was used for only 15 percent of return ED visits and 19 percent of return clinic visits; yet users reported the HIE provided additional information about histories and prevented repeat tests or procedures.118 In the separate cross-sectional survey of 151 users, 43 percent reported using HIE less than 1 hour per week, 39 percent between 1 and 4 hours, and 18 percent, greater than 4 hours per week.86 In a separate study of workflow, nurses accessed HIE when prompted by patients about a recent hospitalization, while providers accessed HIE for reasons beyond simply identifying a recent hospitalization. HIE access occurred at various points of care. Workflow patterns evolved over time, due to revisions in access policies and staffing changes.119 Across these studies, use was higher when the HIE was accessed by nurses and clerks versus physicians.99,118
Separately, Dixon et al. conducted an online survey of 63 infection preventionists in six states with HIE, to gauge the awareness and engagement of these preventionists in using HIE for public health surveillance. One-half of their respondents were unaware of their organization's involvement in HIE, and only 10 percent reported their organizations used the HIE.83
Nine additional studies describe HIE use at the State-level, two studies each from Indiana and Minnesota, and one each from Wisconsin, North Carolina, Massachusetts, Northeastern Ohio, and Louisiana.84,85,88,90,92,100,120,123,124 These studies used data from 2005123 through 2013.90 Methods of data collection included surveys,84,85,88,90,92,120 interviews,85,124 focus groups,123,124 and audit-logs.100,120 Each study makes a useful contribution to the HIE literature.
In an Indiana study of a coordinated antibiotic-resistance infection tracking, alerting, and prevention system, of the several thousand patients for whom email alerts were sent, approximately one-quarter were identified as having had documentation in a different hospital system of a previous infection with methicillin-resistant staphylococcus aureus or vancomycin-resistant enterococcus. Capture of this type of laboratory data was found useful.88 Other Indiana investigators found real-time alerting helpful in prompting followup,92 as did investigators in Louisiana.124 Patients were generally accepting of data sharing, as long as patient benefit was evident.124 In a study of small practices (<20 physicians) in Minnesota, results revealed that no practice was fully involved in a regional HIE and that HIE was not part of most practices' short-term strategic plans.85 In a study more recently conducted in Minnesota, intended to monitor progress toward meeting the legislative requirement that all health care providers have an interoperable EHR by January 2015, investigators found that over one-half of respondents exchanged data with affiliated or unaffiliated hospitals.90 The Tripathi et al. study was unique in that researchers conducted focus groups with patients who lived in three communities that piloted the Massachusetts HIE. All three communities agreed to share all EHR data except text notes, consult letters, and scanned reports. Consumer opt in was the preferred consent method, as it is in VLER. Strategies identified to drive consumer opt in included educating patients and providers about the enhanced convenience and lower costs of HIE.123 Lobach et al. investigated the impact of the HIE on sentinel events for Medicaid patients in Durham County, North Carolina. In an analysis of almost 12,000 patients enrolled, they found that 19 percent experienced a sentinel event over a 6-month period. They concluded that the HIE was useful in population health management using HIE.100 In a description of HIE implementations in Wisconsin, Foldy found that 78 percent (21 of 27) of organizations had HIE projects, some operational, others planned. Most were surveillance systems, delivering data to central registries, but a growing number served clinicians and patients.84 Kaelber et al. investigated HIE use in the Northeast Ohio Public health care system, Care Everywhere. Of the 18 percent (74 of 412) of physicians who responded to the survey, approximately one-third of ED physicians, one-fifth of primary care physicians, and one-tenth of specialty care physicians used HIE. Use was highest when patients were older, with more comorbidities, Medicare/Medicaid insured, or black.120 These results reflect the variation in the implementation and impact of HIE, providing data that are not necessarily generalizable to other settings. These data suggest that small practices are not adopting HIE, while larger health systems are. They further suggest that HIE may be useful in exchanging data in the ED, and for surveillance of infectious diseases, that patients and providers view HIE favorably, and that patients can and do ”buy-in” to the concept of HIE when the benefits are evident.
Extent of Use, Types of Information Exchanged, and Adoption in International or Multinational Settings
Six studies that evaluate the use of HIE in non-U.S. settings met our inclusion criteria, one in Australia,114 one in South Korea,89 one in Scotland,122 one in England,121 two in Finland61,115 (Table 7). Three multi-country studies,94,95,117 two that included data from the United States,95,117 comprise the last three studies in this group. Lee et al. found that the data most commonly transmitted differed by setting. From the hospital it was working diagnosis; from the clinic, it was clinical findings. The most useful data were laboratory or imaging data.89 Silvester and Carr found that commitment and interest in adoption increased over time.114 Mäenpää et al. also found a steady increase in uses over time by physicians, nurses and administrative staff. 115 Maass et al. conducted a unique time-motion study of HIE-facilitated care of 20 diabetic patients, and found that of 20 visits, four involved use of HIE, with one facilitating a faster treatment decision and three providing access to the most recent test results.61 Investigating use in the National Health System in Scotland122 and England,121 Pagliari and Greenhalgh, respectively, both found use to be relatively low, although Pagliari's study is now older (2004). Finally, Jha et al. assessed HIE adoption by physicians and hospitals in six developed countries (United States, United Kingdom, Canada, Germany, the Netherlands, Australia, and New Zealand), and reported varying results, but they did find generally low use due to a variety of identified barriers that prevented fuller adoption. In the United States, fewer than 12 percent of organizations were exchanging data on less than 1 percent of involved populations.117 In a more recent study conducted in Australia, Canada, France, Germany, the Netherlands, New Zealand, Norway, Switzerland, the United Kingdom, and the United States, Schoen found that the percent of primary care physicians reporting HIE capabilities ranged from a low of 14 percent in Canada to a high of 55 percent in New Zealand; use in the United States was reported to be 31 percent.95 In a study that included the 27 European Union countries plus Croatia, Iceland, Norway, and Turkey, Codagnone used a factor analysis to create a composite metric that ranged between 0 and 4 to measure the extent of exchange of health information.94 The metric suggested low to moderate use, with an average score across the 31 countries of 1.88. These early reports suggest that HIE in developed countries was in the initial stages of use in the early years of the 21st century, and is increasing slowly over time.
Key Question 5. How does the usability of HIE impact effectiveness or harms for individuals and organizations?
Key Question 6. What facilitators and barriers impact use of HIE?
Key Points
- The 22 studies of usability did not relate usability to effectiveness or harm.
- The evidence was insufficient to compare usability by type of function (query-based or pull vs. directed or pushed exchange) or by type of architecture (centralized or not).
- The most frequent users rated usability higher than infrequent users.
- Sites with proxy users (e.g., nurses, registrars) in the workflow reported the highest HIE use.
- The three most commonly cited barriers to HIE use were: lack of critical mass using exchanges (8 studies); inefficient workflow (10 studies); and poorly designed interface and update features (7 studies).
- Several facilitators showed promise in promoting electronic health data exchange: obtaining more complete patient information (6 studies); thoughtful implementation and workflow (12 studies); and well-designed user interface and data presentation (7 studies).
Detailed Synthesis
We identified nine multiple site case studies,82,99,116,118,119,127-130 11 cross-sectional studies,58,62,86,94,131-137 and two before-after studies (Table 8).138,139 Because these studies do not include a comparison with a non-HIE organizational site, risk of bias is not reported but is described when the details provided sufficient detail. No studies provided results on harm. All but five of the studies described experience with exchanging health information in the United States.62,94,133,134,139
HIE Usability
Usability was defined in the 1998 International Standards Organization 9241-11 standard as “the extent to which a product can be used by specified users to achieve specified goals with effectiveness, efficiency and satisfaction in a specified context of use.” We found five surveys on HIE usability and most defined usability as it relates to function and/or measured satisfaction with exchanging health information.58,62,86,133,138 One multiple site case study reported usability as composite measures of: ease of use and usefulness, described below for current and intended users of five HIE systems.128 The composite score for perceived ease of use (which included level of agreement for 10 statements on use) averaged 3.9 on a 5.0 scale where 5.0 was “strongly agree.”128 For example users were asked to provide level of agreement for, “Learning to operate ‘the HIE’ was easy for me.” Similarly, the same respondents averaged 4.0 of 5.0 on the perceived usefulness composite score, which was also based on responses to 10 statements. The survey sample included 24 case managers, 21 medical providers, and 17 nonclinician staff members and perceptions about usability did not vary by role. This emailed survey achieved a 62 percent (62 of 102) response rate and the inter-scale agreement reliability; Cronbach Alpha ranged from 0.57 to 0.93.
Usability features were also examined in relation to actual use in one cross-sectional study of health care professionals electronically exchanging health data through the MSeHA.86 Health professionals were emailed the survey and responded to questions about actual use and usability features that included questions from the Questionnaire for User Interface Satisfaction (QUIS) 7.0 instrument in six areas: overall reactions, screen, terminology and system information, effort required to learn the system, system capabilities, and system functionality. Multivariate analyses revealed that average weekly use of the MSeHA was associated with higher scale scores in: overall reactions (OR 1.50, p<0.01), learning (OR 1.32, p<0.05), and system functionality (OR 1.34, p<0.01). The reported psychometrics for the survey questionnaire (inter-scale agreement reliability on the QUIS scales: Cronbach's Alpha ranging from 0.74 to 0.91) and response rate (165 of 237, 70%) were good, reducing concern about bias and increasing ability to generalize.
HIE Satisfaction
Satisfaction with HIE, a measure of usability, was examined in one cross-sectional study134 and one before-after study 138 One additional cross-sectional study that stratified satisfaction by types of HIE is described later.58 Using a pre-post survey study design (n=29), physicians at one clinic and five AIDS service organizations in North Carolina reported increased satisfaction after the Carolina HIV Information Cooperative (CHIC) RHIO was implemented.138 Participants reported improved satisfaction with ease of data exchanged and improved patient care after using CAREWare software. The respondents also perceived that CAREWare was a good use of resources. They also reported improved relations with HIV care partners after implementing the RHIO. By contrast, before implementation, the providers had high expectations for how exchanging information would affect their work and reported some unmet expectations afterward.
In a second study on satisfaction of HIE users in Adelaide, South Australia,134 users who embraced the use of the data exchange integration tools were significantly more likely to rate integration higher than those who were not using it as often (p<0.001). This result echoes a more recent study that found frequent users are more pleased with the usability of an HIE system than infrequent users.86 The response rate for the Massy-Westropp study was 24 percent (55 of 132). While both satisfaction studies134,138 provide descriptive evidence from surveys that users were satisfied with usability, neither provided sufficient details in the methods sections to eliminate bias or a comparison that would enable generalization.
Usability of HIE by Type
We also examined whether certain functionality (direct exchange or push vs. query-based exchange) was more usable. Directed exchange is provider-to-provider electronic exchange of patient information to coordinate care.32 In this type of exchange, the data are electronically sent to the recipient's EHR or clinical inbox.58 In query-based systems, the user accesses an exchange system, queries for information (e.g., ED, hospital admissions, or discharges) on a particular patient and pulls data from multiple health care organizations.58 This is important particularly for unplanned care (e.g., patient comes into the ED).13 We also attempted to evaluate usability by type of architecture (e.g., whether the query-based system used a centralized or federated model). However, few publications provided this level of technical detail to make a comparison. Additionally, the authors used a variety of terms and descriptions which made it difficult to classify usability by architecture. When the authors provided detail on architecture, it was included in Table 8.
Only one cross-sectional study evaluated clinician satisfaction with exchanging health information using query-based (pull) or direct exchange (push).58 In this comparison study, clinicians had access to “pushed” health data (laboratory and radiology) through certified EHRs; physicians who ordered tests could designate other physicians to receive the test results. The physicians in this study could also query (pull), using a secure web portal, for test results, patient demographics and transcribed reports provided by physicians, hospitals, laboratories and radiology centers across the greater Buffalo and Rochester areas of New York. More providers reported using electronically pushed data exchange (80%) than pulled exchange of health information (53%). A greater proportion of physicians reported using pushed data exchange always or most of the time (68%) compared with pulled exchange (19%, p=0.001). The physicians were more satisfied when data were pushed than pulled (p<0.05).
In summary, we found insufficient data to compare usability by type or architecture of the electronic data exchange.
Facilitators and Barriers Impacting HIE Use
We identified many barriers and facilitators to electronic health data exchange in the literature. Evaluations of the MSeHA provide the most complete evidence on barriers and facilitators of use86,99,118,119,130 but other studies echoed similar barriers.62,82,94,116,127-129,131-133,135,136,139 Barriers and facilitators were assessed with qualitative approaches in these studies which were difficult to assess for risk of bias and generalizability. In this section, the barriers mentioned most often are presented in partnership with affiliated facilitators (Table 9).
Addressing Lack of Critical Mass
Concern was expressed in several studies about the need for a critical mass of users and populated patient information.82,116,127,129,130,132,135,136 Underlying reasons for lack of critical mass can include several reasons (e.g., the providers aren't electronically exchanging the data or patients have not consented). Patients concerned with privacy and security may not understand the benefits and/or may not consent to have their data shared with other providers. Even when they do consent, they may not be properly matched to existing data.132 Also, match rate can vary by population and setting; for example, the match rate for providers practicing in a homeless center was lower, but the match rate for ED physicians was higher.132 Some contributing providers reported legal concerns for sharing patient data and may choose to not participate. The end result was that providers searching for patient information may grow frustrated at taking the time to search and stop using the system.
To increase the critical mass, several approaches have been suggested. These include addressing concern about privacy, careful consideration about the consent process, and a process for educating patients.58,82,116,118,127,134,138 To address patient and provider concern about privacy, create clear understanding about privacy and data sharing among all stakeholders (providers, patients, nonclinician partners) prior to implementation.138 In planning for electronic health exchange, several authors noted the importance of deciding whether to have opt out or opt in consent process for patients.58,82,99,116,118,119,127,129,136 Of veterans interviewed, 90 percent were positive about the VLER HIE system. At the same time, 81 percent felt each person should have a choice to opt in and the default should not be automatic participation.116 Opting in protocols seem to yield a high patient participation rate (93% to 97%).58,127,136 When age is considered, older patients opt in more often than younger patients.82 The percentage of consented patients can be increased with a workflow that includes front staff members being trained to educate and consent patients as they first arrive.127 Additionally, patient awareness of provider use of the HIE may increase patients perception of the benefits of electronically exchanged data. Patients in the VA reported being unaware that providers were using the VLER system to access information outside of the VA.116 The authors noted that the user interfaces of the VLER are not visible by patients because the display faces the providers. We identified one organization that used an opt out protocol (MSeHA).118,119 Patients had the option to opt out at every encounter. The opt out rate was 1 to 3 percent,118 which is slightly better than programs with an opt in protocol that lose 3 to 7 percent of patients who do not consent.58,136
Addressing Inefficient Workflow in Electronically Exchanging Data
Often the workflow was inefficient to providers attempting to exchange health information.62,116,118,127,128,130,136,138 Users complained that additional logins and policies against proxy users increased the time the provider needed to access the patient information.
Sites with proxy users (registrars, nurses, clerks, and other physicians) who accessed the system and then provided the information to the attending physician had the highest access rates.99,118 Proxy use was described as a way to save provider time or address needs of limited users without privileges.130,132,136 Additionally, some organizations made it difficult to get privileges to access exchanged data so those with privileges were called upon to look up information for those without.130
An ethnographic qualitative study of the MSeHA identified two role-based workflow models: physician-based and nurse-based.119 These investigators completed 180 observation hours of six EDs and eight ambulatory clinics using the MSeHA exchange system, informational interviews during observation, and nine semi-structured interviews. In the nurse-based model, if a patient mentioned a recent hospital visit, the triage nurse or medical assistant would search for data primarily looking for summary documents related to recent hospital visits, such as a discharge summary, but rarely searched for other medical history. The nurse then printed off the information for use by the provider. In the provider-based model, physicians and nurse practitioners searched for electronically exchanged information for more reasons than hospital visits. These providers browsed online medical history for purposes of decisionmaking. Finally, another study of the MSeHA reported that use dropped significantly after a new policy prohibited registrars from searching the system at the start of a visit.118 Initially registrars would print off a summary sheet of available data. Providers then queried the system, based on the summary sheet. When a new policy came in place prohibiting registrars and nursing team members from accessing the system for security reasons, use dropped significantly.
During implementation several other strategies were mentioned related to changing current workflow: providing training and enough technical support to support the new workflow,86,116 addressing needed culture change,130 and having champion users.99,127 One physician expressed in an interview that exchanging data is a change from practice. Physicians “get bogged down [with exchanging health information] and just want to see patients”.130 Introducing new technology requires addressing the need for change and the resistance that may exist. These studies also encouraged sites to manage expectations upfront138 and have a pilot implementation prior to launch so users aren't disappointed.118,132
Addressing Poorly Designed Interface and Update Features
Several design features of the HIE created barriers to use.62,116,127,128,136 While HIE users understood why textual notes were not exchanged for confidentiality reasons, this lack of context made the information less valuable.136 While some users wanted more information, other users wanted shorter reports to avoid having to scroll up and down, click on many pages or go to another task. Some complained that the exchange contained too much information that was not filtered enough to be meaningful for providers.127,128 They reported that reading a paper report was much faster than reviewing the exchanged information.128 This finding was echoed by another study that recommended the main findings should be sent first in a brief report.62 The design features could be addressed better at the implementation phase by including more providers during the design phase.127 Another facilitator is to continually monitor the quality and usability of the exchanged data to meet standards and the needs of the users.116 Similarly, as more patient data and more types of data were exchanged, users reported that their system response slowed suggesting the need to continually review (and reduce) what was being exchanged.116
Some users expressed concern with how quickly the patient information was updated and found it more efficient to go directly to the partnering clinic or hospital for information than to rely on current information in the exchange.128 Systems that automatically integrate with the providers' EHRs may reduce this concern and also reduce need for users to have to login into multiple systems.62,130
Key Question 7. What facilitators and barriers impact implementation of HIE?
Key Question 8. What factors influence sustainability of HIE?
Key Points
- There was a sizable body of research that attempts to identify and categorize the facilitators and barriers to implementation and factors that affect the sustainability of HIE (52 studies).
- This literature identified several categories of characteristics of HIE activities and organizations (internal factors) that affect implementation
- The most commonly identified facilitators were general organizational characteristics such as leadership while the most frequently cited barriers were disincentives such as lack of financial viability.
- The research cited policy and external environment influences as affecting implementation less frequently than internal factors.
- Laws and mandates that require or support organizations engaging in HIE were the most frequently reported external facilitator for implementation.
- The most frequently cited negative influence on sustainability was competition that limited the necessary collaboration among organizations required to support HIE.
- Two key positive influences on sustainability were desire for the expected outcomes from HIE and the selection of HIE functions most likely to have financial benefits.
Detailed Synthesis
Both implementation and sustainability are organizational level measures of approaches to change. While the experiences, attitudes, and priorities of individuals may be important, ultimately the decisions to adopt and continue to support HIE activities are made by organizations not individuals. For this reason this section focuses on organizational level characteristics and factors that affect organizations' decisions and actions.
Implementation involves identifying new practices or technologies; making the decision to incorporate them into workflow and processes; and taking the actions necessary to prepare for and then initiate adoption of change. Sustainability is essentially the ongoing maintenance of what was implemented, but also includes the idea that the practice or technology that was implemented must evolve to continue to meet the changing needs of the organization. Approaches to understanding implementation and sustainability are rooted in consideration of the fit between an organization and the practice or technology as well as the external and internal factors that either facilitate or act as barriers to the change. In the case of HIE, health care organizations must consider first whether, and then how, to participate in HIE (implementation). Once HIE is established the focus shifts to how to maintain, improve, and grow the systems (sustainability).
We identified 52 studies that addressed implementation and/or sustainability (Appendix F). Fifty of the included studies were published in the past 8 years (2006 to 2014). Eight studies assessed HIE activities in countries other than the United States, 10 were based on U.S. national surveys or data, 10 covered multiple sites in the United States, but the most common were 24 studies that covered single State or regional HIE organizations and their efforts. Six of the studies were about HIE in New York, with five about statewide efforts or several RHIOs and one about New York City. Three were about HIE in California, but each study was about a difference regional HIE organization. No other State or metropolitan region was the subject of more than two studies.
Most of the studies were cross-sectional designs that collected data via surveys and interviews and relied on qualitative data analysis. More specifically 26 of the studies were cross-sectional,79,84,85,87,94,100,108,124,140-157 17 were multiple site case studies that compared experiences across different organizations or sites,82,116,122,123,158-170 two compared outcomes before and after HIE,114,138 three were retrospective cohorts,43,44,48 two were prospective cohort studies,171,172 and two were time series.173,174 Almost half (23 of 52) of the studies used data from multiple sources, while the most common sole sources were interviews (10 studies) and surveys (9 studies). Other sources of data included databases (4 studies), audit logs (3 studies), and one each that used documents, organizational assessments, and a literature analysis.
Given the focus of Key Questions 7 and 8 and the sources of data it is not surprising that most of the analyses where qualitative (25 studies), including narrative summaries and the identification of themes. Twelve studies used quantitative analyses such as descriptive statistics, while seven employed more complex multivariate analyses. Eight studies combined qualitative and quantitative analyses (mixed methods).
Variety in study design, data sources, and analytic methods make assessing the quality across the 52 studies that address these Key Questions problematic. Quality assessment is frequently tied to risk of bias and the criteria are related to how the groups are constructed in cohort studies and how quantitative analyses are used to make these comparisons. While there are criteria for quality in other types of studies, these are used less frequently and there is not yet widespread agreement on the criteria, what is necessary to meet them, or what constitutes the difference between levels of quality. We can say that most of the studies in this section either attempted to include all sites or participants or included large samples of the population, increasing the likelihood that they are representative of the target populations. Also as we excluded purely descriptive studies, the qualitative analyses tended to follow established procedures (e.g., involvement of multiple researchers in coding) although in several cases the description of methods was limited.
One or more facilitator or barrier to implementation was identified in 42 studies while 17 studies reported factors related to sustainability. Some studies addressed by implementation and sustainability. We grouped the facilitators into eight categories and the barriers into seven categories created based on our interpretation of their similarities. These are described in the text below. In Tables 10 and 11 the specific factors included in each category are listed below the category in the first column and the studies that report this factor related to implementation or sustainability are cited in the second and third column respectively.
Implementation
Facilitators
Seven of the eight categories of facilitators for implementation identified in the literature (below) are predominately “internal” factors, concerned with the characteristics of the HIE or its components, while only one category, external policy, addresses the environment for the HIE.
General Structural Characteristics
These include leadership,43,144,164,174 prior experience with or readiness for IT projects,138,158 preexisting membership in a network,155 or trust and solidarity among practices participating in HIE. One evaluation of HIE efforts concluded that, “having IT initiatives underway prior to receiving… funding contributed substantially to the states readiness and subsequent implementation progress.”158
HIE Specific Structures
This category includes findings from seven studies and specific factors were goverance,43 and participatory approaches that included efforts to encourage user engagement and stakeholder buy-in.48,122,124,150,159 Examples include findings that involving users in development was key to implementation150 and that a participatory process and shared decisionmaking permitted the HIE to address different values held by participants related to balancing individual rights and public health.124
Orientation Shift in HIE Organizations
This is a category that could also be called mission or change in ideology. Two studies found that implementation depended on a shift from competition to collaboration,154 or from ownership of data to continuity of care that included realizing the value of external information.170 Another important shift is from treating HIE activities as a pilot test to integrating them into a robust system integrated in workflow.163 This research highlighted experiences that staying in the pilot phase for too long was detrimental to full implementation and increased use.
Design Characteristics
Cited as a facilitator for implementation in six studies. Studies found that a design that reflects an understanding of work flow,150 and designs with smaller scale or more limited scope were more likely to be implemented.169,173 The architecture and adaptability of information systems were cited as important design characteristics by two studies161,169 with one researcher explaining, “Our findings suggest that communities embarking on HIE initiatives would do well to examine how particular HIE technical architectures map to their objectives, local context, existing relationships, sustainability plans, and vision of both present and possible future needs.”161 An additional study found that successful HIE organizations used some existing standards rather than waiting for more universal standards that are under development.159
Key Functions
This is a category of functions that may seem obvious but that are essential. Four studies reported that HIE systems needed to be set up so that use became part of care routines, so that the burden and time required of staff was minimized and so that useful data was provided.85,114,116,169 One study concluded: “Implementation outcomes…were shaped substantially by the degree of attention dedicated to reworking procedures and practices so that HIE usage becomes routine.”169 Another study highlighted that addressing issues related to providing better quality data and integration into workflow allowed successful system-wide deployment.116 However, the capacity for advanced use (HIE that provides new tools or information) may be an important facilitator as HIE evolves. One study cited the example of HIE providing the foundation for development of a system that alerted providers to important patient events leading to both improvements in quality of care and contributing to organization goals such as medical home certification.143
Implementation Support
The need for an organization to provide resources to support the implementation of HIE was cited in the results of four studies. Specific types of support cited included technical assistance and training infrastructure,114,167 the ability to do extensive testing for data quality,154 and a comprehensive strategy for HIE activities and their implementation.168
Expected Outcomes
Two studies reported that specific expected outcomes were key to implementation. These included public awareness of the HIE148 and link to a community need.146 A third study highlighted the importance of establishing tangible intermediate goals in order to keep participants engaged and foster ongoing support.159
External Policy
Federal and State laws and mandates,85,140,159 as well as grants,158 were identified as facilitators in five studies when they promoted, required, or funded HIE director or foundational components such as EHRs. One study of 31 countries in Europe documented that HIE activities were more widespread in countries with national healthcare systems verses countries with social insurance systems.94
Barriers
Barriers to HIE implementation cited in the research are not simply the inverse of the facilitators. While there is some overlap in the categories, the barriers cited include more external, environmental factors. The seven categories of barriers are included in Table 11.
External Policy
This is the one category of barriers that corresponds most directly to a category of facilitators. While Federal and State laws and funding and grants were seen as facilitators for HIE implementation, changes in Federal policy,164 the fragmented nature of funding (e.g., in public health HIE may be funded for some activities and not others),157 and the uncertainty and the timelines for funding were seen as barriers.143,174 One study identified the disconnect between State or Federal government goals and local realities as a significant barrier to HIE development.166
Disincentives
This is a broad category and the largest, including 20 studies. Four studies reported that competition for patients and the difficulty making the business case for HIE are important barriers,108,142,151,155 and five additional studies more specifically cited the costs of HIE and the lack of financial viability.85,108,141,158,167 In states with mature HIE implementations, where presumably the infrastructure was in place, participants cited costs and a lack of understanding of the value proposition as the major barrier to participation.141 Three studies identified the fact that the organizations that invest in HIE are not always the ones that benefit (e.g., hospitals invest in HIE but do not necessarily realize the savings when duplicate tests or admissions are avoided).155,158,160 One study cited a trend to set up HIE that supported more administrative tasks over clinical tasks as a barrier.94 Two additional studies cited insufficient resources.84,87 In addition to financial and resource concerns, five studies identified concerns about data misuse, ability to protect privacy, and ethical issues related to sharing data.124,142,148,160,165
Structural Characteristics
This is a category of barriers that includes some parallels in the facilitators—leadership can promote HIE, but lack of leadership or effective communication from management can be important barriers according to two studies.85,174 While being in a network might facilitate HIE, one study concluded that hospitals that are part of larger systems are less likely to participate in HIE, perhaps because patients stay in the system and there is less need for external data.149 Another identified barrier is the mismatch between the geographic coverage of the HIE and the service areas for patients, as would be the case for a hospital with a service area that crosses State lines and a State-based HIE.148 Diversity and complexity within and across HIE systems were also cited as barriers. One study concluded that the extent of differences made sharing and applying lessons learned from one experience to another difficult166 while another stated that many types of stakeholders and data result in levels of complexity that can impede implementation.165
Technology
The second most frequently cited (13 studies) category of barriers to implementation were issues related to technology. More specifically these barriers related to the technological environment. Two studies cited the lack of standards or differences in standards across organizations in the terms and definitions used in the data as well as the format of data sources.87,172 Similarly three studies reported that interoperability across systems was an issue,85,142,151 while three more studies specifically mentioned difficulties related to EHR interfaces that made exchange difficult or resulted in inappropriate or inaccuracy matching and merging.143,154,167 Lack of system resilience, including operating speed and reliability was identified in a study of HIE activities in 31 European countries94 while a study in the United States cited lack of information system capacity, particularly in smaller organizations. The authors of the study in European countries concluded, “we can pinpoint some clear bottlenecks in terms of ‘electronically embedded’ system inter-connection with other healthcare players, technical inter-operability, system resilience, and security.[…].Limited adoption of Health Information Exchange (HIE) is surely also a consequence of such bottlenecks.”94 One study was less circumspect in citing problems with vendors and reporting that, “the most significant barriers … were largely due to a long and arduous process of collaborating with commercial entities involved in technology design and delivery.”48
Lack of Necessary Components
This was presented as a barrier in five studies. Four studies reported that participants or providers were not sufficiently engaged in implementation of the HIE or were not aware of its value.84,141,154,158 One study emphasized that physician engagement was important by pointing out that physicians are the primary source of care data and suggested that for this reason their engagement is the primary determinant of HIE success.154 One study focused on the challenges in securing data sharing agreements as a barrier to implementation.143
Fit
This is short hand for the correspondence between an innovation and the potential adopting organizations. Lack of fit is a barrier that may not be apparent when the innovation is assessed out of context. Two studies found that HIE implementation was deterred when organizations or departments were unable or unwilling to integrate HIE into work processes.152,167 Another instance where lack of fit is problematic is when expectations are not met. Two studies reported that expectation for the data in terms of timeliness and completeness were barriers to implementation.100,145 One additional study underlined the fact that timelines were not realistic, particularly in cases where the technology was to be integrated into quality improvement activites.143
User Interface and Functionality
Eight studies cited specific user interface and functionality problems as barriers to implementation. These included lacking the technology and human resources needed to adapt the organization's software and processes for HIE,141 and the need for training and expertise.142,174 Two studies reported that user problems as fundamental as forgotten logons145 and the technical performance of network connections hindered implementation.116 One study reported corrupt data as a barrier to HIE,172 while another reported the lack of tests that identify that the ability to match patients across systems were a barrier to development.82 One study of an advanced application of a system to generate alerts based on HIE data stalled when the providers to notify about a patient's events could not be identified.100
Subgroup Differences
During our review we attempted to abstract data from the included studies that would allow us to determine if the barriers and facilitators to implementation varied by type of HIE, health care settings, and systems or IT system characteristics. Most publications did not include this information so we were not able to consistently identify any differences.
We also considered that implementation might change over time as HIE becomes more common and as new HIE efforts could benefit from the experience of early adapters. At this time we do not see any notable changes, but this may be to the relatively short time period (less than a decade) covered by the included studies. While the hardware and software that make HIE possible have changed significantly in less than a decade, organizational change and clinical practice patterns have historically changed more slowly.
Sustainability
In making a distinction and summarizing the factors identified in the 17 studies that considered sustainability separately, we placed studies according to what the researchers/authors reported as their focus and we accepted their definitions and/or measures.44,108,123,140,146-149,153,156,159,160,162,163,166,171,173 As HIE and health IT mature, a definition of successful sustainability may be developed and the evidence could them be reanalyzed incorporating such a definition.
The factors that have been found to influence the sustainability of HIE fit into the categories created to summarize the facilitators and barrier for implementation, and in some cases it can be difficult to make a distinction. This is in part because sustainability is still a future goal rather for all but the organizations that were very early adopters of HIE.
We presented the sustainability factors under the most appropriate category on Tables 10 and 11, but added rows for specific factors when they differ from those identified in studies of implementation.
Ten included studies identified factors that are positive influences on sustainability. These included having an HIE implementation led by a health information organization as opposed to a health care organization171 and having leadership and technology that allowed the HIE organization to innovate and react quickly to changes in the market and environment.163 Sustainability was also linked to marketing the HIE to patients,123 to how an HIE system incorporated a community needs assessment,171 and if it selected functions likely to financially benefit the participants.147,160 One study suggested that HIE implementations with advanced functions such as providing decision support are more sustainable147 while another pointed out that these functions should add value related to either Stage 2 meaningful use or reform priorities in order to support sustainability.159 Achieving important expected outcomes such as improved quality of care153 and realizing savings that exceed the costs of the HIE system are understandably important44 and one study described how most of the HIE organizations it examined are developing subscription fee structures to provide ongoing financial support.159 One study reported that laws and mandates could promote sustainability as well as implementation of HIE. 140
However, laws and mandates, particularly changes in these were also one of the reported negative influences on sustainability.162,166 Four studies found that competition and a difficult business case for HIE were challenges to sustainability.148,149,156,173 Four structural characteristics of HIE were also identified. These included the mismatch between the HIE geographic coverage and where patients receive services,156 issues related to governance and trust among the HIE collaborators,153,156 and one study found that HIE that focused on long-term care organizations were less likely to be sustainable.171 Lack of standards was the only factor directly related to the technology for HIE reported among the negative influences and it was reported in only one study.162 Lack of sufficient engagement of participants and providers was also reported in one study.146
While there was less evidence related to sustainability to report in this review than for implementation, the studies to date suggest it is the more complex of two very complex and related topics. One researcher suggested this complexity when making the assessment that this issue for HIE sustainability are sociological not technological.156 Another suggested sustainability may become less a matter of availability of funds and more one of trust and responsible stewardship.123 Combined, this result seems to be that sustainability of HIE activities is further in the future than many originally thought. As one observer noted “recent history suggests that achieving the kind of ubiquitous use among providers or other users that can drive a financial value proposition takes time—and likely more time than HIOs have modeled in their sustainability plans.”163
- Results of Literature Searches
- Description of Included Studies
- Is HIE effective in improving clinical, economic, and population outcomes?
- What harms have resulted from HIE?
- Is HIE effective in improving intermediate outcomes such as patient and provider experience, perceptions, or behavior; health care processes; or the availability, completeness, or accuracy of information?
- What are the current level of use and primary uses of HIE?
- How does the usability of HIE impact effectiveness or harms for individuals and organizations?
- What facilitators and barriers impact use of HIE?
- What facilitators and barriers impact implementation of HIE?
- What factors influence sustainability of HIE?
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