Becoming a Health Data Utility
Last month, the NC HIEA highlighted the ways in which electronic health record systems (EHRs) can reduce medical errors, and how the interoperability of health information exchanges (HIEs) is further increasing patient safety by reducing duplicative testing and increasing access to and awareness of a patient’s health history across the care continuum.
In April, we celebrate not only National Public Health Week (April 3-9) but also World Health Day (April 7), with the theme this year of Health For All. This is where we are expanding our goal of health data exchange between providers to broader industry sectors, which is the work of the health data utility or HDU.
The following definitions clarify the difference between an HIE and HDU and are provided by Civitas Networks for Health, a collaborative member organization of health information exchanges and regional health improvement collaboratives:
HIE: "HIEs are commonly defined as delivering the electronic transmission of health care-related data among health care facilities. HIEs have traditionally facilitated access to and retrieval of clinical data to provide safer and more timely, efficient, effective, and equitable patient-centered care."
HDU: "HDUs are statewide models or entities with the advanced technical capabilities to combine, enhance, and exchange electronic health data across care and services settings for treatment, care coordination, quality improvement, and public and community health purposes. HDUs enable specific, defined use cases with privacy and security that exceeds federal minimum standards established by HIPAA and as amended by HITECH to ensure patient privacy and appropriate data use."
Health data utilities allow for participation and data sharing from a variety of stakeholders, including public health and governmental agencies, hospitals, laboratories, health plans, social service organizations, and more. This bidirectional exchange of information allows providers near real-time access to public health data, while ensuring the privacy and security of that data.
NC HealthConnex already meets the criteria for and is already serving as a health data utility for North Carolina in many ways. We enable public health reporting to the N.C. Division of Public Health (DPH) that helps providers meet communicable disease reporting requirements and attest to the federal Promoting Interoperability program funded by the Centers for Medicare and Medicaid Services. Additionally, the NC HIEA has partnered with the DPH to build two chronic disease registries (stroke and diabetes), provide data for syndromic surveillance, and support communicable disease contact tracing.
If this status were to be formalized by federal policy and memorialized in North Carolina state law, NC HealthConnex would be in a position to apply for federal funding to further the public health infrastructure in North Carolina.
The COVID-19 pandemic taught us that there is a huge need for trusted data from many sources working together to bring us a more complete picture of health and, together with public health agencies, to build a more comprehensive strategy for testing, response, and health outcomes, especially for more underserved populations.
The multi-stakeholder, multi-collaborative approach of HDUs means that health care entities, public health entities and community health entities can contribute to shared interests and goals. Health data collection, sharing and analysis would no longer be siloed. It also means federal and state rules for data privacy and security would need to become more streamlined for access across state lines.
Civitas is encouraging federal policymakers to work towards creating, designating and funding existing health information networks, such as NC HealthConnex, as health data utilities. The network also recently released a framework for health data utility adoption for states that includes progressive phases to allow for incremental growth and continuous improvement.
The data that is submitted to NC HealthConnex can be leveraged for public health initiatives and help support state agencies such as the N.C. Department of Health and Human Services. In addition to medical care needs, data to address public health preparedness, social needs and health inequities would be included to address overall health needs, not just purely medical ones.
For further reading on this topic, The Journal of Public Health Management and Practice recently published findings on sharing data for public health, the barriers to this exchange, and the benefits to health equity of this broad information exchange.
NC HealthConnex Provides Data to Support a Study Addressing Disparities in Health Outcomes for Black Mothers
Every April, the health care community observes Minority Health Month, an effort to build awareness about the disparities in premature death and illness in minority populations. Within this broader effort, Black Maternal Health Week is held to address solutions to the disproportionate rates of mortality and illness among Black mothers and infants. This year, that week fell on April 11 – 17.
According to data from the CDC, Black women are three times more likely to die from a pregnancy-related cause than white women. Black infants are also two times more likely than white infants to be born with a low birth weight.
NC HealthConnex is assisting in developing solutions to these disparities by fulfilling the data exchange and dashboard requirements of the UNC-led study, ACURE4Moms, or Accountability for Care through Undoing Racism and Equity for Moms.
The study seeks to improve health outcomes for Black mothers and infants by addressing institutional racism and bias in health care processes, gathering health care data, and providing community-based, social support in the form of doulas.
The 40 North Carolina clinics participating in the study are full participants of the NC Health Information Exchange Authority (HIEA). This allows for a bi-directional flow of health data that will be necessary for several of the study’s four arms:
- The control group will provide standard care management and enter standard obstetrics and other health data into their electronic health records software (EHR).
- The data arm will add practice-based data interventions to their standard care practices. This would include the use of the Disparities Dashboard and Maternal Warning System alerts. These two systems are explained below.
- The doula arm will match high-risk patients with doulas who are trained to provide care and support during prenatal and postnatal appointments.
- A combined data and doula arm will combine standard care management, practice-based data interventions, and community-based doula support.
The primary desired outcome for the study is to decrease low birthweights, indicating the underlying causes have been addressed by health care providers. To that end, an alert system will notify certain clinics when a patient has a risk factor for low birthweight, including any physical, mental, or social risk factors related to the study.
This Maternal Early Warning System generates alerts with information available through NC HealthConnex and is set up through NC*Notify, a subscription-based alert service offered to full participants of the NC HIEA.
Data related to pregnancy-related complications will be presented quarterly to clinics in the data arms using a Health Disparities Dashboard, created and maintained by the NC HIEA. The dashboard will show gaps in health care processes and outcomes broken down by race and ethnicity. Data elements to be collected include expected due date, date of the first prenatal visit, baby birthweight, and other health data available through NC HealthConnex.
One of the study’s goals is to reduce discrimination experienced by Black patients’ during their prenatal care visits. The data in the dashboard will help providers see where differences in pregnancy complications are occurring across patients of different races so they can respond to increase the quality of care for those patients.
In addition to the dashboard, a survey will be sent to patients both during pregnancy and after they have given birth. Staff at all participating clinics will also have access to Racial Equity Training and an NC AHEC facilitator to help clinics improve care workflows and patient communication.
The participating clinics were randomly assigned to one of the four arms last year and are currently in the onboarding process. Each practice will be supported for two years. Those in the control arm will be able to start implementing either data or doula interventions or both starting in July 2025, with support until July 2026.
This project is funded by the Patient-Centered Outcomes Research Institute (PCORI). For more information about the project, please visit its page on the PCORI website at https://www.pcori.org/research-results/2021/reducing-racial-disparities-maternal-care-through-data-based-accountability.
New User Guide Available
Attention Clinical Portal Users:
Updated User and Reference Guides for NC HealthConnex are available and were published to the website on Tuesday, April 4, 2023.
The portal release notes are linked here. If you have questions or need assistance, please contact NC HealthConnex at HIEA@nc.gov or 919-754-6912.
Employee Spotlight
This month, we introduce Regina Cucurullo, the NC HIEA’s new Deputy General Counsel.
Regina advises the HIEA on legal matters such as data governance agreements, access and compliance with state and federal data laws. She also helps to draft contracts and inform NC HEIA policy and procedure and serves as counsel to the NC HIEA Advisory Board.
Regina holds a law degree from North Carolina Central University School of Law and a Master of Laws from the University of Arkansas School of Law. She previously worked at the North Carolina Attorney General’s Office where she represented the Department of Health and Human Services for 10 years. Regina has a passion for public health and is excited to serve the NC HIEA and the Advisory Board.
Enterprise Security and Risk Management Office (ESRMO) – Monthly Cybersecurity Newsletter
Health care providers should be aware of potential cybersecurity risks and understand the importance of data privacy. NC HealthConnex, as part of NCDIT, is attuned to mitigating these risks with our technical partners.
This month’s edition of the N.C. Department of Information Technology's Enterprise Security and Risk Management Office's October Cybersecurity newsletter contains information on sensitive data being fed to ChatGPT. Data security service Cyberhaven found that 4% of workers at its client companies input privacy-protected information into the AI service. In one case, a doctor input a patient’s name and medical condition into ChatGPT to have the service draft a letter to an insurance provider.
The NC HIEA takes data security and privacy very seriously and does not share Protected Health Information (PHI) outside of secure channels. Click here to learn more about the NC HIEA’s privacy and security policies.
Not Connected? Read on for Opportunities To Improve Patient Care During the Onboarding Process
If you have an executed Full Participation Agreement and are awaiting your data connection to NC HealthConnex, there are several services and training materials to which you already have access.
You may request credentials to access the NC HealthConnex web-based, secure Clinical Portal, which allows you to view data that is currently uploaded to NC HealthConnex from other providers on patients with whom you have a treatment relationship. While your own data is not uploaded until you “go live,” meaning you have completed your connection project, you will still have access to the data of other providers who may have treated your patient.
Additionally, you can enroll in the event notification service, NC*Notify, which provides ADT (admission, discharge, transfer) notifications on patients you select to monitor. This can be useful for knowing important care information such as a high-risk patient who has visited the ER or when a patient has transitioned to or from a residential care facility.
The NC HIEA also offers several other value-added services, including Direct Secure Messaging, an encrypted email tool that allows clinicians to send protected health information about their patients through a secure encrypted network, and Public Health Reporting, including the N.C. Immunization Registry, Diabetes Registry, and Electronic Lab Reporting
Once your connection project has been added to the project intake list, you and your technical point of contact will be contacted to complete a project scoping checklist and confirm any additional items needing to be completed prior to project kickoff.
In the meantime, you can engage meaningfully in the onboarding process by taking advantage of online training materials such as webinars, user guides, and self-paced modules on our website. You can also request training for your practice using this form.
Upcoming Events:
- How to Connect Call – Monday, May 22, 2023 – 12 p.m. to 1 p.m. Register here.
- Advisory Board Meeting – Wednesday, June 7, 2023 – 2 p.m. to 5 p.m. Online and In-person Info
- Teletown Hall Quarter Two – Wednesday, June 14, 2023 – 12 p.m. to 1 p.m. Register here.
- How to Connect Call – Monday, June 26, 2023 – 12 p.m. to 1 p.m. Register here.
In The News:
(VIDEO) Interoperability and Patient Safety Promoted by Integration of Healthcare Records - Juan Nanez, a speaker at HIMSS23 and director of Programs at Paso del Norte Health Information Exchange, says when clinicians can access past patient history to guide decisions, hospital readmissions and ER visits decrease.
SAS & Duke Health Announce AI Partnership - Their collaboration to develop new cloud-based artificial intelligence for healthcare will focus on improved care and delivery outcomes, business operations and health services research.
ONC Releases Proposed Rule to Further Cures Act Interoperability Goals - The proposed rule includes provisions to update standards adopted under the ONC Certification Program to advance interoperability and reduce costs.
How HL7 FHIR APIs Are Driving Healthcare Innovation, Interoperability (ehrintelligence.com) - With use cases across clinical care, research, health information exchange (HIE), and public health, HL7 FHIR APIs span the healthcare innovation spectrum.