Care coordination can be defined as the deliberate organization of patient care activities among people involved in a patient’s care to facilitate the appropriate delivery of health care services [1]. The Institute of Medicine identified care coordination as one of 20 priorities to improve the quality of health care in the United States [2]. The accurate and timely sharing of information is a critical component for effective coordination. In 2013, a survey conducted by the Office of the National Coordinator revealed that 1 in 3 individuals reported a gap in information exchange when seeking care for a medical problem. In addition, half of those who experienced a gap reported they had to tell the provider about their medical history because records were not received by another provider [3]. When information is lacking, patient safety may be compromised, duplicate services received (ie, unnecessary repeat laboratory testing), and health care costs increased [4-10].

One challenge to effective information sharing is that medical records are controlled and managed by health care organizations often resulting in a fragmented record for patients who receive care from multiple health care systems [11]. Electronic health records (EHRs) and health information exchanges (HIEs) are organizational health information technology solutions that are intended to help improve communication within and between care settings [12,13]. Although there has been was significant progress in EHR implementation, adoption of HIEs is variable across states and organizations [14]. In a study by Furukawa et al [15], only 14% of providers stated that they exchanged health information electronically with providers practicing outside of their health care system.

In contrast, electronic personal health records (PHRs) are managed by individuals [16,17]. Patient PHRs (patient portals) tethered to EHRs can help patients access information easily. The ability to do so has increased in recent years, in part due to meaningful use criteria that require health care systems to provide patients with access to their own health information [18-20]. Stage 2 of the meaningful use criteria further expands this mandate with requirements to provide patients the ability to transmit information securely [21]. Consumer-mediated exchange complements organizational HIE between care providers and systems. Given the requirements for consumer access to their health information, many organizations have adopted the Blue Button [22]. However, little is known about patient and provider attitudes about consumer-mediated exchange.

The Blue Button concept emerged in January 2010 at a Markle Consumer Engagement Workgroup with the goal of empowering consumers by providing them the ability to generate and download a single electronic file that contains their personal health information [23]. In August 2010, the Department of Veterans Affairs (VA) launched their Blue Button in My HealtheVet, VA’s combined patient portal and PHR [24]. Blue Button allows patients to easily view, print, and download their VA medical record data and self-entered information to create a report of their health information. Patients are able to customize the information they choose to include in their report by date range and data class. To date, more than 500 payers, providers, health-related associations, and others have taken the Blue Button Pledge to promote patient access to their own health data [25]. Although Blue Button awareness has grown, there is still a significant need for education because one-third of providers in a 2014 survey reported no familiarity with the Blue Button initiative [26]. With growing consumer access to their health information, it is important to examine patients and providers perceptions and experiences with Blue Button adoption and how it may be used to improve care coordination.

Recipients of VA health care benefits routinely receive care from both VA and non-VA providers. The 2011 Survey of Veteran Enrollees’ Health and Reliance upon VA found that 77% of Veterans had alternative health insurance (ie, Medicare) [27]. In a study of rural Veterans, 75% indicated receiving care outside of the VA in the last year [28]. The 2014 Veterans Access, Choice, and Accountability Act [29] is also expected to increase care in civilian sectors making the need for effective care coordination even more critical for VA patients.

This study sought to understand how VA patients were adopting the Blue Button, information-sharing practices between VA and non-VA providers, and providers’ thoughts about patients as the mediators of HIE. Further, with Blue Button and consumer-mediated sharing of health information as newer concepts, this study explored (1) if a report printed using the Blue Button could facilitate information sharing to support clinical care and (2) patient and provider preferences regarding receipt of this information.

In this sample of patients, VA providers, and non-VA providers, information sharing between providers relied primarily on the patient. Reports generated by the Blue Button feature of a PHR portal that contain both EHR data and patient self-entered information have great potential to facilitate care coordination in such contexts. Patients indicated some usability issues with the My HealtheVet Blue Button; however, they generally had favorable opinions of the technology. Providers recognized the need for improved information sharing. In particular, non-VA providers felt that having access to more VA health information would be of significant benefit. Many providers we spoke with expressed interest in a way to share information electronically across health care delivery settings. Although this study focused on VA patients receiving care from non-VA providers, meaningful use Stage 2 criteria promotes comparable consumer-mediated health information sharing between all health care settings.

These findings are consistent with other studies that found patients are responsible for sharing health information between providers [30,34-36] and limited use of the Blue Button printout despite its potential to improve information sharing [30]. The review of a sample Blue Button printout provided valuable insight about the potential impact of patients sharing their health information during a clinical encounter. Although the length of the report and time to review were potential barriers, in practice, patients who shared information using the Blue Button tended to be selective in choosing what they provided to their non-VA providers, consistent with other research [36,37]. Patients indicated they want to share information specifically relevant to their care and in a way convenient to the provider. One concern is that patients may not know exactly what information to share. Although this may be perceived in some cases as patients intentionally omitting what might be clinically relevant information, it may in fact be a function of health literacy. Patient portals provide easier and timelier access to the EHR data in an unprecedented way. However, as noted earlier, because medical information has historically been managed at an institutional level, patients may have limited experience managing their own health information. This study and the prior literature suggest both a need to educate patients about using their patient portal to share information and for patient portals to be designed in ways that support patients’ need to easily share critically important clinical information. In addition, it is equally important to inform providers about Blue Button and for providers to encourage patients to share their health data from providers in other care settings [38].

Non-VA provider experiences with care coordination are consistent with findings by Nayar et al [34]: 71% of non-VA providers surveyed reported they were rarely or never informed about VA care visits. Difficulty sharing information back to the VA was also apparent, with only 33% reporting that they had shared information with VA. HIEs are one mechanism that may help facilitate bidirectional exchange between systems [39], but adoption of HIEs is variable across states and organizations [14]. It is also critical for EHRs to support care coordination; however, EHRs often do not contain much information about outside care [40] and it is difficult to share across settings due to interoperability issues [12,41]. This supports the need for consumer-mediated information sharing because patients know where and when they will be receiving care. It also can empower patients by allowing them to choose what information to share and to be an engaged participant in their health care team.

This study provides support that providers and patients value and trust patient sharing of health record information and patient-generated data. Although patients can self-enter information in My HealtheVet, this information is not yet accessible to their VA providers. Data available from self-report in PHRs, remote monitoring devices, or personal wearables, can help inform providers’ understanding of a patient’s health between visits. Interest in these data is growing and it is important to develop meaningful ways for this data to be shared and integrated into workflow to help inform clinical care when relevant [42]. Efforts are underway for this information to be accessible to health care providers within the VA clinical information system and incorporated into clinical workflow.

Since these interviews, there have been continued enhancements to My HealtheVet, including increased patient access to information. In January 2013, clinical care notes were added to the Blue Button (VA OpenNotes) [43] and a Continuity of Care Document (CCD) / VA Health Summary became available. This document is a health summary that follows standards for interoperability with the goal of being integrated into other systems’ EHRs. The VA CCD includes many of the essential data specified by non-VA providers; however, it does not yet provide the most recent clinic note, which was requested by non-VA providers in this study. The ability for patients to securely transmit their CCD to an approved organization, non-VA provider, or application is currently in field testing.

Provider-focused HIE and consumer-mediated HIE can complement each other and provide benefit in different use cases. For example, in emergency department care, the immediate need for information may be served best by query or direct-based HIE models; whereas, in outpatient chronic care management, in which patients are often seen by multiple providers in different settings, consumer-mediated HIE can also effectively support care coordination. It is critical to educate patients about opportunities to participate in all types of HIE so they can make informed decisions about their preferences for sharing of their health information. As reflected by some participants in this study, some patients may not want to share all their health information with all providers. Expanding efforts in these areas supports the National Quality Strategy that focuses on patient engagement and effective communication as priorities to help meet the 3 broad aims of better, more affordable care for individuals and communities [44]. In a complex health care environment, multiple strategies are necessary to ensure information is available to provide safe and improved health care regardless of how the information is exchanged.

Limitations of this study include interviewing only patients who currently used My HealtheVet. Participants were asked to hypothesize how they would use the Blue Button printout for information sharing and clinical care, but it is unknown what they might do in actual practice. However, there is promising research reporting positive benefits of PHR use and patient engagement for health outcomes [45-49]. In addition, it was not required that patients have a non-VA provider; nevertheless, their use of the Blue Button to share self-reported information back to VA was relevant. The patients were predominantly older, white, male Veterans; younger or female patients may have different perspectives.

Although this study focused on the VA health care system, the results may be transferable to other settings where patients receive care from multiple health care systems and other organizations using Blue Button. In speaking to patients, VA providers, and non-VA providers, we gathered the perspectives from a range of stakeholders who are engaged in information sharing and use of tools such as Blue Button. Participants from geographically different regions of the country and different kinds of provider expertise (ie, family medicine, specialty care, and nursing) were included. In addition, meaningful diversity is also evident in the patient sample (ie, income, self-reported health status, and My HealtheVet experience). This variety of perspectives increases transferability [50] of findings across contexts.

More research is needed to examine whether patients sharing their health information with providers from different systems improves health care processes and outcomes. For example, does this consumer-mediated sharing improve medication reconciliation, reduce therapeutic duplication of medications, and/or reduce duplicate laboratory services or costs? In addition, future research should examine the impact on workflow for the provider receiving the information and, as transmit requirements from meaningful use 2 are implemented, examine how information is received and incorporated into the EHR of the receiving provider or organization. As technology advances, effective processes must be developed in all care settings to enable all providers engaged in a patient’s care to effectively share information for care coordination.