Building Blocks: Newborn Screening Health IT Implementation Guide and Toolkit

Section 2: Managing Relationships with Hospitals for Newborn Screening Data Exchange

This resource is part of the Building Blocks: Newborn Screening Health IT Implementation Guide and Toolkit. Explore the full Building Blocks: Newborn Screening Health IT Implementation Guide and Toolkit.


Section Summary

When planning to implement a data exchange with hospitals, it is critical for the project team to think through the process that the laboratory should follow to engage the potential external messaging partner, confirm commitment, and communicate the exact specifications for the message and its transport. This planning will ensure consistency, although engagement levels will likely differ somewhat for each hospital.

The activities described in this section transcend many of the other tasks described in the Guide. A key to a successful exchange begins with the laboratory initiating a conversation with hospitals as soon as they begin to consider implementing NBS messaging. Moreover, the relationship with each hospital must be maintained throughout the entire project lifecycle and beyond, even after the data exchange is in production. Cooperation and buy-in from hospital partners is essential to the success of the NBS messaging project and, in general, should be secured before work begins in earnest at the lab.

This section provides a set of best practices and tips, collected in interviews with representatives from both laboratories and hospitals. Based on the particular circumstances within its jurisdiction, the laboratory must decide when and how much to engage hospitals in each step of the project, from initial planning, to designing a technical solution, to developing the message, and for continued operations and maintenance. This section can serve as a resource for those decisions.

Identify Hospitals


The first step in engaging hospitals is to identify possible hospital partners and discuss the opportunity with them. This outreach may take the form of individual conversations, a public webinar or both. Next, the laboratory should screen hospitals to determine whether they are ready to begin implementation. Keep in mind that hospitals may need to undergo a lengthy internal process to authorize the project. Therefore, outreach to hospitals may begin while the laboratory is still completing the activities described in Section 1. Indeed, as the laboratory pursues funding to implement NBS electronic data exchange, it may be helpful to have already identified interested hospitals and have obtained an expressed commitment from them, such as a signed letter of intent.

"Establishing and maintaining the pilot exchange of ETOR required a significant investment from both partners in the relationship, including changes in workflows."

Wisconsin Newborn Screening Program; State Case Study #2

Who and How Many

It is simply not possible for the laboratory to onboard NBS messaging with all hospitals in the state at the same time. Therefore, the laboratory will need to develop a plan to engage with messaging partners. It is advisable to keep the scope limited at first. The laboratory’s target milestones will determine the approach to prioritizing hospitals. The laboratory may prioritize hospitals based on the hospital’s readiness or interest, the proportion of state births that the hospital represents, or other factors. If a key metric of the implementation is based on converting a certain percentage of NBS testing to electronic data exchange, or on covering a certain percentage of births, the laboratory may need to aggressively court these larger hospitals.

The laboratory may consider onboarding a single pilot hospital before expanding NBS messaging to other hospitals. In selecting this pilot, the laboratory may leverage an existing relationship with a hospital, particularly if the hospital has already worked with the laboratory’s informatics team on another project or is known to have a savvy and proficient team.

Even after the first hospital is in production, the number of hospitals that the laboratory can implement simultaneously will depend on the resources available and on the capacity of the laboratory’s informatics team and systems. The laboratory may consider assembling a group of hospitals that use the same EHR to effectively create a community of peers who are all implementing NBS messaging at the same time. Conversely, the laboratory may consciously work with a group that uses different EHRs to ensure that the chosen technical solution will work ecumenically.

The laboratory can coordinate with statewide associations and workgroups to reach specific hospital partners. The statewide hospital association may be able to help identify appropriate hospitals based on their profiles (e.g., birth volume, EHR systems, etc.). At a minimum, the association can disseminate information about the NBS data exchange project to member hospitals and gauge interest. Statewide EHR workgroups may serve a similar purpose. The laboratory may also consider scheduling a webinar to discuss the project in more detail with the entire hospital community and solicit participation; the associations can help publicize the event. Ideally, hospitals will respond to this initial outreach and approach the laboratory. Hospitals that take the initiative are more likely to remain committed and see the implementation through to completion. However, it may be necessary for the laboratory to reach out more proactively to targeted hospitals that have a high sample volume or that serve a large proportion of the population.

What To Tell Hospitals

Whatever the approach to reaching out to hospitals, the laboratory will need to develop a presentation and an informational packet to share with potential messaging partners. The purpose of this packet is to introduce the hospital to the project at a high, non-technical level. The material in the packet should explain the public health purpose of the project, the obligations of the messaging partner, and the potential benefits for the hospital. The laboratory may use brochures, articles, webpages, or other marketing materials to convey this information. The project champion within the hospital can use this informational material to help hospital leadership understand and authorize the project. As an example, the Virginia DCLS has made the Informational Package  available to potential hospital partners through its website.

The laboratory should provide whatever information it can to help the hospital estimate the personnel resources and costs associated with this project. In general, the hospitals we interviewed consider the implementation of HL7 ETOR messages for NBS to be a fairly modest effort. The level of effort will depend on the technical solution that is chosen, the messaging capabilities of the hospital, and on whether the laboratory is using a third-party software vendor to stand up the interface. In addition to IT work, the nursing staff will need to assess and make changes to existing workflows. Staff will need to be trained on the new protocols, and on any new software applications that the hospital adopts. The project manager may ask hospitals to track the effort involved in onboarding NBS messaging so that the laboratory can make these (anonymized) metrics available to other partners.

Importantly, the packet should include material that reviews the public health importance of newborn screening and its impact on healthcare. In many cases, hospital staff performs NBS as a matter of routine and do not consider the broader implications. By educating the staff on the impact of NBS to patient outcomes, the laboratory can increase cooperation.

The packet should also stress the potential for NBS messaging to gain efficiencies, improve timeliness, eliminate clerical data entry, and ensure that results reach the right provider to facilitate timely follow-up, diagnosis, and treatment for affected newborns. In short, NBS messaging has the potential to save money and save lives. Some laboratories have developed a focused document that summarizes the return on investment to illustrate what hospitals gain by implementing electronic messaging.

Some laboratories have incentivized hospitals to participate in NBS data exchange by offering test kits or other inducements. If funding incentives are available, the team should have a clear plan for how to direct these incentives to partners. Additionally, the laboratory can offer hospitals softer incentives, such as publications, presentations, or other means of recognition. The informational package that is provided to hospitals should describe any incentives that are available.

Assess the Hospital’s Readiness

As the laboratory begins working with a hospital, it is advisable that the laboratory assess the hospital’s readiness to implement NBS electronic data exchange. The laboratory can request that the hospitals complete a partner assessment and, where appropriate, review the responses during an initial call.

"Lessons learned include when developing timelines, the team needs to consider competing EHR related projects and the availability of facility staff, such as network engineers for VPNs and ADT testers. The understanding and expertise of hospital staff influence the speed of a Newborn Admission Notification Information (NANI) implementation."

OZ Systems; Vendor Case Study #1

The assessment may be a high-level review of the hospital’s systems and setup to confirm whether they have the minimum technical capabilities to implement this data exchange. The assessment should also inquire about any upcoming large-scale upgrades or releases that may affect the proposed timeline. If applicable, the assessment should ask if the hospital is interested in working with a third-party vendor to expedite the implementation process.

The laboratory may decide to delve more deeply into requirements in the assessment and initial call and review the message guide to evaluate the hospital’s ability to meet the requirements in the constrained guide. Such a discussion should focus on the gaps that exist and whether the hospital would have to make significant EHR updates to address them. The laboratory may want to suggest third party vendors who will work with hospitals and assist in their onboarding and implementation.  Third party vendors (ex. Oz) may be very good solutions for hospitals who do not have internal IT resources suitable for completing this project.

Communicate with Partners

It is highly recommended that the laboratory identifies and engages a project champion at each hospital who will advocate for the project, increase accountability, and function as the primary contact of communication between your institutions. This individual may be a member of laboratory or IT leadership, or a NBS nurse manager. Preferably, it should be someone who understands the hospital’s NBS workflow and data exchange capabilities, as well as its administration and governance.

The project champion will help the project manager identify other contacts within the hospital who will work with the laboratory throughout the various stages of the project. In time, the hospital’s technical architects and network engineers will need to set up the connection with the laboratory, and program staff will help review and validate test messages. Note that a Hospital Contacts Template has been included as part of the Building Blocks Toolkit in order to simplify the process of identifying the members of the hospital team. The project manager should update the stakeholder matrix with this information. As the project proceeds, it will be important to have a clear understanding the roles and responsibilities of each person.

It is important to maintain regular, open communication with the hospital throughout the implementation and once the data exchange is in production. During the implementation, the laboratory may choose to organize a peer call with all hospitals that are currently implementing NBS messaging, but individual checkpoints with each hospital are generally a more effective means of discussing and resolving issues, communicating progress, and spurring tasks towards completion.

It is a best practice for the laboratory to regularly solicit feedback from hospitals on the overall onboarding process and all aspects of the data exchange. The project manager may consider scheduling a post action interview with each hospital after the data exchange goes live. The laboratory can apply any lessons learned to improve the process with future partner hospitals. The project team should also review and update the onboarding package based on this feedback so that hospitals have the information they need to make decisions.

"In order to learn about the processes, challenges, and timelines of the electronic data exchange project at each hospital, the Virginia NBS Program needed to communicate with the hospital project team regularly...The Virginia NBS program has had success participating in shorter meetings with individual hospitals versus a monthly extended meeting with all project participants."

Virginia Newborn Screening Program; State Case Study #6

The laboratory will need to maintain the relationship with hospital partners even after the data exchange has gone live. Primarily, the laboratory must keep a list of hospital contacts up to date to troubleshoot any issues with the data feed. In addition, the change control system that the laboratory sets in place must include mechanisms for processing change requests from hospitals, communicating changes to the appropriate staff within the hospitals, and working with the hospital team to update the message. See Section 4: Operations and Maintenance of Newborn Screening Health Data Exchange for further discussion of the continuous monitoring and improvement activities that the laboratory will conduct.

Mitigate Delays


The most significant obstacles to completing the implementation are often not related to the technical aspects of the data exchange. Many factors can cause delays: the hospital may schedule an upgrade to the EHR or new leadership in a key position may choose to revise the project plan. Nevertheless, in conversations with us, laboratories returned repeatedly to three aspects of working with hospitals that can adversely affect the timeline of the project. First, the laboratory must convince hospital leadership to authorize the project. Second, the hospital must execute the relevant data sharing agreements, which requires a thorough legal review. Third, the project may linger on the schedule of the hospital’s IT department for months while the IT resources are devoted to work orders with a higher priority.

Project Authorization

The hospital’s project champion must guide the hospital through an internal process to review, approve, and authorize the project. This process can be quite time-consuming, with approval taking on average at least 6 months after the kickoff call with the laboratory. Based on the hospital’s organizational structure and policies, the champion may need to obtain separate buy-in from different stakeholder groups, including IT, legal, the childbirth center and other interested programs. The laboratory can support the hospital during this process by providing an informational package that describes the purpose of the project and the responsibilities of the hospital. The laboratory may need to work with the hospital team to prepare a business case specific to the hospital, deliver presentations to hospital leadership, provide input on other documentation that the hospital develops, or answer questions. In particular, it may be helpful for the business case to identify cost savings for the hospital, as well as any incentives or disincentives for implementing the data exchange. The laboratory may also reach out to practicing neonatologists and local pediatricians in the area that can testify to the potential benefits to their patients and the need to make this project a priority.

Partnership Documents

As early as possible, the laboratory should clearly articulate the requirements of the project to hospital partners. The hospital will be expected to make resources available to work with the laboratory to implement and test the data exchange. The hospital’s nursing, IT, and laboratory staff must work with the laboratory to roll out the new process and troubleshoot any issues. It is important for hospital leadership to understand and acknowledge the scope of the work required to fully implement the agreed upon data exchange. In at least one instance, the hospital cooperated to get result messages flowing from the laboratory to the hospital, but then demurred building order messages to share with the laboratory.

The laboratory may consider trying to formalize the hospital’s commitment through a written agreement such as a project charter, even if this document is not legally binding. Laboratories have reported mixed results with this approach, as some hospitals decline to sign any agreement without subjecting the document to an arduous review process. Nevertheless, it is important for all parties to understand the role and responsibilities of the stakeholders involved.

Other scope decisions that need to be made include how to handle follow up and confirmatory tests or alternate collection locations. The logistics of these and other situations will need to be assessed, planned for, understood and agreed on by all parties. Laboratory leadership will also need to determine how flexible to be with hospitals in terms of amending the process and the message. The goal of NBS electronic messaging is to reduce the time and resources involved in sending and processing NBS test orders and results; the laboratory should carefully weigh any accommodations that the laboratory decides to make against this goal. It is unwise for the laboratory to appease hospital demands if the modifications create unmanageable accessioning processes or convoluted workflows. The case studies included in this Guide illustrate some strategies for balancing these concerns.

Once the project is authorized, the laboratory and hospital will probably need to sign other partnership documents such as a memorandum of understanding (MOU) or a Data Use and Retention Agreement (DURSA). The exact documents that will need to be executed will depend on the legal arrangements between the data exchange partners. At a minimum, the partners will need a messaging policy document of some kind that will lay out how the data will be treated, who owns the data, the security and HIPAA concerns of both parties, and other particulars. See Identify a Health Data Exchange Technical Solution  and Establish Connectivity for Data Exchange for more information on the specific details these agreements should contain. The laboratory may also consider signing a service level agreement with hospital partners to establish the support that the laboratory will provide once the data exchange is in production. The hospital’s legal team will need to review these agreements in detail. Even if hospital leadership is on board with the project, the legal review can continue for several months. Often, the execution of the partnership documents constitutes the longest delay for the project.

Note that the requirements for data sharing agreements vary by jurisdiction. If state law requires that hospitals share data with public health agencies, the laboratory may not be obliged to sign data sharing agreements with hospitals. The project manager should consult with the agency’s legal resources to understand the ramifications.

Hospital IT

Once hospital leadership has signed off on the project, the hospital will need to prepare its systems and perform its own workflow analysis. If not already done, the hospital will have to review the constrained message guide closely to identify gaps in the current data extract. The hospital may need to update its EHR to address data gaps and implement the technical solution that the hospital will use. Depending on the IT structure, competing priorities, and the availability of program SMEs within the hospital, it may take a considerable amount of time to accomplish these tasks. In interviews, hospitals projected several weeks of actual work to implement the data exchange, but it may take several months to get the project on the IT project schedule. To the extent possible, the project manager should encourage the hospital to make healthcare impact of the project and the needs of the hospital’s nursery and laboratory system the priority, rather than deferring the project to accommodate the IT department.

"Active and engaged participation from Newborn Screening Laboratory management and IT personnel are essential for a successful electronic data exchange project. Understanding data workflow and defining clear requirements at the beginning of the project is critical to keep the electronic message implementation on schedule. Changes to project scope and lack of support from NBS laboratory, NBS IT, and partnering hospitals will lead to additional work efforts and extended timelines for all parties involved."

Perkin Elmer; Vendor Case Study #2


Working with hospitals can be challenging. This section highlights the elements of this partnership and describes some strategies from which the laboratory can draw when navigating this relationship. Expect delays. The laboratory should endeavor to identify project champions within the hospital who believe in the project and can influence decision makers. Fortunately, the hard work of establishing relationships with these individuals can pay off later, as the laboratory will be in a better position to move other data exchange projects forward with these partners.

Resources in Section 2: Managing Relationships with Hospitals for Newborn Screening Data Exchange