NN&I Article on Closing the Information gap

Closing the information gap: Health information exchange in dialysis

Sharing clinical information through a health information exchange (HIE) offers a systems-minded solution to overcome the information gap between outpatient dialysis providers and hospitals.


Patients with end-stage renal disease  need frequent, ongoing dialysis care. Many present with multiple chronic conditions that require a number of prescribed medications, treatment plans, and lab tests from multiple sources. Dialysis providers are challenged by incomplete transfer of pertinent clinical data from patient hospitalizations, impeding safe care transitions. Sharing clinical information through a health information exchange (HIE) offers a systems-minded solution to overcome the information gap between outpatient dialysis providers and hospitals. This article focuses on the process used to institute an HIE in outpatient dialysis facilities to improve clinical practice and close the information gap in identifying bloodstream infections in the ESRD patient population. The result of this project has laid the foundation to develop and implement HIE-enabled interventions to improve ESRD population health.


Since the enactment of the Health Information Technology for Economic and Clinical Health Act (HITECH), adoption and use of information technology (IT) by health care providers in the United States has dramatically increased. The HITECH Act gives the U.S. Department of Health and Human Services (HHS) the authority to establish programs to improve health quality, safety, and efficiency through the promotion of health IT, including electronic health records (EHRs) and private and secure health information exchanges (HIEs).

EHR adoption has grown dramatically among health care providers; however, the widespread use of interoperable systems and HIE has lagged in comparison.1 Implementing HIEs across organizational and state boundaries presents new challenges that require a collaborative effort to bridge the information gap and increase data transparency between health care providers.

The ability to obtain health information across care settings for ESRD patients is essential to providing high quality care. ESRD patients experience rehospitalization rates, (i.e., hospital admissions occurring within 30 days of a hospital discharge) of 34.6% compared to only 15.3% of older Medicare beneficiaries (i.e., those greater than 66 years old) without kidney disease.2 The disproportionate readmission rates of ESRD patients’ calls into question the communication and care coordination occurring as patients return to outpatient dialysis facilities from acute hospitalization.

The electronic transfer of health information among health care organizations has been projected to save billions of dollars per year and significantly improve the quality of healthcare.3 The growing use of EHRs and HIEs allows electronic health information to be available securely, anytime and anywhere health care providers and patients need it. Assisting dialysis providers in connecting to a statewide or regional HIE is an efficient solution to overcome barriers to care transition. This article discusses a process for implementing an HIE in outpatient dialysis facilities to improve clinical practice and presents an application of HIE to close the information gap in identifying bloodstream infections in the ESRD patient population.

Implementing an HIE in dialysis

Quality Insights Mid-Atlantic Renal Coalition (MARC) began collaborating with Fresenius Medical Care in February 2016 to establish the first large dialysis organization connection to an HIE in the United States. Twenty Fresenius outpatient hemodialysis facilities in Maryland were selected to connect to the Maryland HIE, Chesapeake Regional Information System for our Patients (CRISP). In 2009, the Maryland Health Care Commission (MHCC) and the Health Services Cost Review Commission (HSCRC) appointed CRISP to build and maintain the technical infrastructure to support a statewide HIE. Under state law, effective December 1, 2011, each hospital under jurisdiction of HSCRC was mandated to electronically connect to the state-designated HIE, CRISP. 4

As of April 14 of this year, all 48 acute care and specialty hospitals in the state are submitting clinical information about individual patient health care encounters, including admission, discharge, and transfer (ADT) data. Hospitals outside of the state are also sharing ADT data via CRISP, including 9 hospitals in the District of Columbia (DC), 6 in Northern Virginia, and 22 in West Virginia. The data made available by outside localities is for Maryland and DC residents only.


Connection and enrollment to the HIE took approximately 12 months. Figure 1 illustrates the process for connecting the dialysis facilities to the HIE. MARC began by identifying and collaborating with appropriate stakeholders, including dialysis facility clinic managers, medical directors, directors of operation, regional quality managers, and corporate leads for IT, legal and risk management. Conference calls were held by MARC with Fresenius stakeholders and CRISP representatives to develop a strategic plan for enrollment in the HIE. This was finalized and initiated in February 2016.

The first six months of implementation were devoted to legal and compliance tasks: Fresenius legal and compliance team reviewed the HIE participation agreement, modified the notice of privacy practices language for dialysis facilities participating in the project to include information about the HIE, and finally, developed an opt-out process by which patients could request to be removed from the data exchange. HHS does not outline specific steps or requirements for obtaining a patient’s consent to participate in an electronic HIE; however, states can pass laws or create policies that mandate interoperability, require the use of health IT standards, or dictate the connection to an HIE. These mandates can include clauses that articulate the opt-in or opt-out policy. The default patient consent policy for the Maryland HIE is opt-out, meaning that all patients health information will be shared among participating doctors’ offices, hospitals, labs, radiology centers, and health care providers unless the patient signs a form indicating they do not wish to participate. The legal and compliance process was completed July 2016.

Information technology compatibility

The next step involved reviewing the IT available to seamlessly share data between the dialysis facilities and the HIE. Fresenius was technologically capable of sharing data electronically, but the capability had to be operationalized for the CRISP integration. The Fresenius IT team started by developing a patient panel for each dialysis facility for upload to the HIE platform using direct secure messaging. A patient panel is an electronic file of active patients seen in the dialysis facility and is updated monthly. This process is commonly used by health care providers to exchange information on unique patients with an HIE until an automatic, electronic process can be implemented. The patient panel methodology has remained in place while the Fresenius technical team collaborates with the HIE team to establish an encrypted virtual private network (VPN) for the HL7 messages via an ADT feed (i.e. admissions, discharges, and transfers).

HL7 messages are used to transfer electronic data between disparate health systems. Each HL7 message sends information about a particular event such as patient admission, discharge, or transfer. Once the ADT method is tested the automatic, electronic flow of information will become a reality.

Onboarding and clinical integration

Beginning in October 2016, the 20 dialysis facilities began the onboarding process and were introduced to the HIE. The HIE that was utilized offers multiple services but only two were initiated: the encounter notification service (ENS) and the clinical query portal. Features of each service are described below.

The ENS enables dialysis facilities to receive real-time alerts when a patient is hospitalized. The service is offered in a partnership with CRISP and participating hospitals at no cost to ambulatory providers (e.g., physician outpatient offices, primary care providers, and dialysis providers). The ENS sends a secure email message to the provider when a patient listed on their panel has a hospital encounter. Providers can choose which alerts are most relevant to them, including hospital admissions, discharges, or emergency room visits and can view the chief compliant and discharge disposition if provided by the hospital. The clinical query portal facilitates the sharing of patient data across institutional boundaries and provides real-time clinical information. The portal gives providers the ability to securely retrieve patient information through the internet, displaying in a view-only screen at the point of care.

Onboarding of the dialysis facility personnel involved four sequential tasks as described in Figure 2. The process began by connecting facilities to the ENS. Individuals who receive alerts are not required to hold a medical license (e.g., secretaries), but must have a need to access the HIE to perform their jobs.


Step 1 involved the dialysis facilities identifying which staff to enroll in ENS, such as a clinical manager, registered nurse, director of operations, and/or clinic secretary. Selected users for ENS were communicated to the HIE via a checklist submitted by email at the initiation of enrollment.Enrollment in the ENS was the first onboarding task completed to foster engagement in the project. Dialysis facilities began to receive encounter notifications of patients’ interactions with healthcare organizations outside of the dialysis facility increasing data transparency.

Step 2 connected medical directors to the HIE. The registration process took approximately 30 minutes. Medical directors were advised to have their medical license, physician-related licensing numbers (i.e., drug enforcement administration, national provider identifier, and controlled dangerous substances) as well as an electronic copy of their driver’s license or passport available for registration.

Step 3 initiated enrollment in the Clinical Query Portal. Dialysis facility staff identified delegates, licensed personnel (i.e., clinic managers and registered nurses), from their ENS checklists to obtain access to the clinical query portal. Delegates were communicated to the HIE via a bulk load form (i.e., Excel document) containing staff license information, dialysis facility affiliation, role within the facility, and the associated medical director responsible for approval. The HIE requires that users who are not physicians or advanced practice nurses, act as delegates of a physician, to access the Clinical Query Portal.

Step 4 required medial directors to communicate delegation of licensed personnel to the HIE. Each delegate, (i.e., licensed personnel) was evaluated through a credentialing process by the HIE once a request for access was received. Requests for approval of delegates was communicated to the HIE via a standardized email sent by the medical directors. The email included dialysis facility staff names and roles in the facility. Onboarding for clinical personnel took approximately six months to complete for 20 dialysis facilities, concluding in March of this year. The process of identifying the appropriate medical director, enrolling the medical director in the HIE, identifying the appropriate dialysis staff to whom the medical director could delegate access to the clinical query portal, and communicating that delegation to the HIE organization for access credentialing proved to be more tedious than originally envisioned.

Training sessions were held bi-weekly by MARC to introduce dialysis facility staff to HIE features. Currently, MARC hosts monthly webinars to discuss HIE technical issues, review collected data on HIE use, and clinical outcomes. MARC will continue to assist dialysis facility staff to incorporate the HIE into their daily workflow. Continuing education will be available to ensure user understanding of HIE services. Additional facility personnel will be enrolled as part of the clinical integration process to ensure data transparency among dialysis facility shifts. Having multiple users with access to the system minimizes information gaps within the dialysis facility and prevents an information monopoly by single users. Finally, management of enrolled users access will be monitored by Fresenius to ensure the HIE organization (i.e., CRISP) is promptly informed when the job status or users’ role within the facilities changes and affects their access rights to the HIE. Upon notification, the HIE will terminate user access in compliance with the organization’s policies and procedures.

Effective application of HIE in the dialysis setting

HIEs provide a vehicle for improving the quality and safety of patient care. Data extracted from HIEs can improve surveillance and reporting of important patient outcomes, such as bloodstream infections (BSIs). Fresenius facilities’ connection to the HIE in Maryland was initiated as a pilot approach to retrieve BSI information from hospitals. Previous National Healthcare Safety Network (NHSN) data quality evaluation activities performed by MARC identified a substantial gap in BSI reporting among dialysis facilities.

Dialysis providers are required to monitor and report any BSI that occurs on the day of or the day following admission to a hospital to NHSN, according to the Centers for Disease Control and Prevention’s Dialysis Event Protocol.4 However, facilities are frequently unaware of hospital-diagnosed BSIs due to the insufficient information transfer and lack of care coordination from hospitals to outpatient dialysis facilities. Dialysis providers must overcome barriers to obtain lab results from hospitals, as most freestanding outpatient dialysis facilities do not have access to hospital EHR systems. Dialysis facilities can request admission and treatment records from hospital medical records departments, but the disclosure of information could take days to weeks.

When patients miss treatments, dialysis facility staff often complete follow-up calls and learn of patients’ hospitalizations. However, this notification does not provide relevant or detailed clinical information (e.g., lab results) to the dialysis providers to ensure a seamless return of patients to dialysis post-hospitalization. HIEs eliminate time spent faxing or calling other providers for clinical information by providing data transparency among health care providers. Access to an HIE increases accessibility to health care data, which in turn provides dialysis facilities with more complete patient health records to identify, treat and communicate about BSIs diagnosed in acute care hospitals.


Care transitions from the inpatient acute hospital provider to the outpatient dialysis facility leads to gaps in information and can impede the delivery of high quality care. Information sharing, such as diagnosed BSIs across health care settings, can curtail unintended consequences like hospital readmissions or compromised patient safety. With the advancement of health care information technology, a variety of solutions are available to connect disparate health care providers. Data exchange via HIEs can mitigate information gaps impacting patient care. Increasing data transparency among providers is key as the importance of value-based care efforts mature. Obtaining blood culture results collected in a hospital via an HIE is one example of effective application of an HIE that could improve the fragmented care coordination for the continuation of treatment in an outpatient dialysis setting.


  1. Health Information Technology Policy Committee. (2015). Report to Congress: Challenges and Barriers to Interoperabilitygov. Retrieved 14 April 2017, from https://www.healthit.gov/facas/sites/faca/files/HITPC_Final_ITF_Report_2015-12-16%20v3.pdf
  2. US Renal Data System: USRDS 2016 Annual Data Report: Atlas of Chronic Kidney Disease & End-Stage Renal Disease in the United States. Bethesda, Md., National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, 2016.
  3. Talbot T. Public Reporting of Health Care–Associated Surveillance Data: Recommendations from the Healthcare Infection Control Practices Advisory Committee. Annals of Internal Medicine. 2013;159(9):631. doi:10.7326/0003-4819-159-9-201311050-00011.
  4. Maryland Depart. of Health and Mental Hygiene. Division of State Documents. 2017. Available at: http://www.dsd.state.md.us/comar/comarhtml/10/ Accessed April 10, 2017.


  1. Centers for Disease Control and Prevention. Dialysis Event Protocol, 2015. https://www.cdc.gov/nhsn/pdfs/pscmanual/8pscdialysiseventcurrent.pdf accessed April 5, 2017.
  2. Rudin R, Volk L, Simon S, Bates D. What Affects Clinicians’ Usage of Health Information Exchange? Applied Clinical Informatics. 2011;2(3):250-262. doi:10.4338/aci-2011-03-ra-0021.
  3. Krishnan M, Wilfehrt H, Lacson E. In Data We Trust: The Role and Utility of Dialysis Provider Databases in the Policy Process. Clinical Journal of the American Society of Nephrology. 2012;7(11):1891-1896. doi:10.2215/cjn.03220312.
  4. Patel P, Kallen A, Arduino M. Epidemiology, Surveillance, and Prevention of Bloodstream Infections in Hemodialysis Patients. American Journal of Kidney Diseases. 2010;56(3):566-577. doi:10.1053/j.ajkd.2010.02.352.
  5. Thompson N, Wise M, Belflower R et al. Evaluation of Manual and Automated Bloodstream Infection Surveillance in Outpatient Dialysis Centers. Infection Control & Hospital Epidemiology. 2016;37(04):472-474. doi:10.1017/ice.2015.336.

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It has been Nichole Jefferson‘s personal mission to tell her story and promote awareness. She was diagnosed with end-stage renal disease (ESRD) in October 2003. At that time, not only was she unaware of what that meant; she also did not know she was a high-risk factor for developing the disease.
After the initial shock of the diagnosis, she decided peritoneal dialysis (PD) was the best option and utilized PD for a few years until she needed to switch to hemodialysis.
She received a kidney transplant from a deceased donor on June 12, 2008, but at the time, she didn’t realize it was simply another form of treatment and not a cure. Today, Nichole is waiting for a new transplant.
Nichole has worked with many advocacy groups on Capitol Hill and has provided her personal experience with ESRD to leaders in the field of nephrology. She tries to express the feelings of those who are unable or unwilling to speak for themselves.