One thing to consider when planning for health information exchange is the needs of the patient and how they will benefit from the technology. Since HIE aims to connect providers and public health agencies in orders to share and aggregate patient data so information is easily accessible at multiple points of care, it is easy to see how it can improve patient outcomes. However, when looking at direct use cases by the patient we can look to personal health records, or PHRs, to see how patient needs can be met with health information exchange. PHRs are an “Internet-based set of tools that allow people to access and coordinate their life-long health information and make appropriate parts of it available to those who need it” (Braunstein, 2014, p. 169). These tools include technologies that allow patients to do tasks such as access test results, track immunizations, and send information to new providers. HIE helps these tools function by exchanging information from the providers to the patient. Access to this information on the patient level gives patients more control over their own health care and it helps them coordinate care when the patient has multiple providers that are in different locations.
Connecting patients with points of care through HIE and PHR is important because it allows them to have easier access to the providers, lab and imaging results, and appointment scheduling. According to one study that looked at consumers’ attitudes toward personal use of HIE, the interest in personal use of HIE was higher among those “who believed their healthcare providers communication with each other was suboptimal” and “who believed that using personal HIE would improve their communication with their physicians” (O’Donnell, 2011). Increasing patient access to their own health information and improving their access to their providers will allow patients to make more informed decisions about their own healthcare.
One of the largest concerns with utilization of PHR and HIE is security and protection of patient data. One way to address this concern is to create an opt-in approach to health technologies where the patient first must consent to having their data uploaded to the HIE from the physician’s EHR. While this does help address patient concerns of who can see their data, there are still concerns of what data is shared and used. According to one article, “the more such information is made available to authorized users of the system, the more patients feel concerned about privacy” (Tripathi, 2009). This is important because the less a provider decides to share, the more comfortable a patient might be to opt-in, but it also means that there is less detailed information in the HIE for use. Finding a balance between the type of information that is being shared, how much information is shared, and who can access the information is necessary to maximize the number of patients that utilize the HIE while also having the highest quality of information.
One type of technology that is already in use is the patient portal. A patient portal is a web-based application that “facilitates communication between patients and their health providers” (Braunstein, 2014, p. 179). These portals allow patients to send and receive secure messages from their providers, make appointments, and view test results. One quality of patient portals that limits their uses for HIE is that normally patients cannot input their own clinical data into the portal. For this reason, the implementation of technology that would allow patients to also upload their own clinical data, such as heart rate or blood pressure, would improve on the patient’s impact on HIE data. This could be done through the integration of wearable health devices that track patient vitals to the patient’s portal so they can upload recent health data for use by their physician.
Privacy and data protection is not just a patient concern, but also a valid legal and ethical concern. When developing HIE and patient access applications, developers need to consider The Health Insurance Portability and Accountability Act. HIPAA is an important piece of legislation because it lays out the framework for protections in patient health information. In order for HIE to ethically and legally provide services, they must make sure that patient information takes top priority since the Privacy Rule of HIPAA places limits on who can view and access health information.
As the demand for exchange of information grows with a heavily computerized health care system, the future of HIE depends on the resources that are given to it. In an idealized future, HIE infrastructures will grow nationally to the point where information that originated from one hospital can easily be shared electronically with another point of care anywhere in the country without the need for health professionals to fax information. Patients would be able to access their own health records from multiple clinics and hospitals with ease so they can make informed decisions about the coordination of the care. HIE could also be used to improve public health coordination, especially in situations like a pandemic where patient data about symptoms and disease diagnosis would allow researchers to have accurate and up to date information to formulate public health guidelines. Unfortunately, HIE is still facing an uphill battle. One study notes that “For the first time since our survey began in 2006, we observed a decrease in the number of operational HIE efforts and a much larger decline in the number of efforts in the planning stage” (Adler-Milstein, 2016). This is due to a lack of national funding and inability to secure participants. In order to continue to promote health information exchange efforts, federal and state funding needs to be secured.
One of the biggest governmental motivators for HIE is the Office of the National Coordinator. In fact, for the ONC a “near-term goal is to ensure the widespread adoption and use of directed, electronic information sharing that allows providers and patients to securely send and receive information for coordinated, seamless care and to meet meaningful-use requirements” (Williams, 2012). The ONC has been creating and implementing policies that promote the growth and use of technologies that facilitate the electronic exchange of information. This has included improving interoperability by promoting standards that make information exchange easier, such as the Direct protocol which provides “a simple, secure, standardized way to send encrypted health information to trusted recipients over the Internet, enabling providers to meet meaningful-use exchange requirements” (Williams, 2012).
In this final concept map, HIE is mapped based on the input sources, the output services, the structure of the HIE, and the core consideration of patient privacy. The top half of the concept map is concerned with the flow of information, with the HIE being the intermediary that is used to facilitate the movement of data. The bottom half of the map includes a breakdown of the HIE architecture and key considerations that are needed when building the HIE, which includes not only how the information is stored and transmitted, but also how it will maintain its integrity with data protection. This map does not include background information, such as how the ONC has influenced the growths of HIE and the importance of interoperability with EHR systems. This is because while these factors help the HIE get started, they do not have as much influence on the structure of HIE in terms of what data it takes in, who the data is for, and how the data is organized and transmitted.
References
Adler-Milstein, J., Lin, S. C., & Jha, A. K. (2016). The Number Of Health Information Exchange Efforts Is Declining, Leaving The Viability Of Broad Clinical Data Exchange Uncertain. Health Affairs, 35(7), 1278-1285. doi:10.1377/hlthaff.2015.1439
Braunstein, M. L. (2014). Contemporary health informatics. Chicago, IL: AHIMA Press.
O’Donnell, H. C., Patel, V., Kern, L. M., Barrón, Y., Teixeira, P., Dhopeshwarkar, R., & Kaushal, R. (2011). Healthcare Consumers’ Attitudes Towards Physician and Personal Use of Health Information Exchange. Journal of General Internal Medicine, 26(9), 1019-1026. doi:10.1007/s11606-011-1733-6
Tripathi, M., Delano, D., Lund, B., & Rudolph, L. (2009). Engaging Patients For Health Information Exchange. Health Affairs, 28(2), 435-443. doi:10.1377/hlthaff.28.2.435
Williams, C., Mostashari, F., Mertz, K., Hogin, E., & Atwal, P. (2012). From The Office Of The National Coordinator: The Strategy For Advancing The Exchange Of Health Information. Health Affairs, 31(3), 527-536. doi:10.1377/hlthaff.2011.1314