Improving Information Sharing and Patient Safety: Hear from ONC’s Rachel Nelson

Rachel Nelson | April 3, 2024

Rachel Nelson is the compliance and administration branch chief in ONC’s office of policy, regulatory and policy affairs division. She leads an interdisciplinary team of subject-matter experts focused on advancing information sharing and patient safety.

1. Tell us about some of the projects or initiatives that you lead.

I have a diverse portfolio, spanning development and implementation of specific policies around information sharing, supporting enforcement of the ONC Health IT Certification Program’s regulations, and supporting the health IT safety work spearheaded by ONC’s clinical division.

Currently, I am heavily focused on information sharing policy and how we can enhance information blocking regulations to address priorities identified by the national coordinator. For example, we recently finalized a definition of “offer health IT” that addresses health care providers more confidence that certain activities will not change how the information blocking regulations apply to them. My team also includes our medical director for patient safety, who is leading the first update in several years to the SAFER Guides.

2. What led you to your career here at ONC?

I came to ONC in 2008 believing in the potential of data and interoperability to improve health care for patients and for the people who provide it. It’s exciting to work with intelligent, creative people trying to speed up the realization of that potential throughout the country.

3. What are some skills or strengths that you contribute to your work at ONC?

My greatest strength is versatility. I have a diverse skill set that I have applied and honed through an array of “behind-the-scenes roles” — doing things not always visible outside the team implementing a specific initiative but essential to their success.

I enjoy applying various skills in different combinations to a variety of challenging opportunities from regulatory policy to projects really close to my heart. Throughout my time at ONC, I continually strive to develop resources to help people in the field use available health information and technology to improve health and care.

I started federal service as a master’s-prepared health services administrator and came to ONC having wrangled both healthcare quality improvement and policy projects for CMS. For example, I managed multi-year projects exploring approaches to improving pain management and reducing pressure ulcer prevalence for people receiving long-term care. I later coordinated implementation of the first nationwide initiative for physicians to receive incentive payments for voluntarily reporting quality measurement data on Medicare claims.

I obtained my JD and law license while serving in a variety of roles including special assistant to a deputy national coordinator, senior advisor in what was then ONC’s office of science and technology, and deputy director of what was then ONC’s office of clinical quality and safety.

4. What is something you’ve accomplished at ONC that you’re most proud of, and why?

This is a tough question because I was here before the HITECH Act and was one of the “all hands-on deck” team to implement high-priority initiatives and help build ONC to sustain our expanded statutory duties over time.

I’m proud of the hand I had in crafting some early blocks on which others have built so many amazing things. Early on at ONC, I helped set up a research grants program that advanced, among others, the project that invented the SMART® on FHIR® application programming interface (API). I also see where our international collaborations are now, and I am very gratified to have shepherded to reality a 2010 memorandum of understanding between HHS and the European Commission that laid groundwork for building our global relationships around health IT.

I also feel immense satisfaction for having managed the development and implementation of smaller projects and programs to leverage health IT for health system performance improvement. I believe my efforts have helped foster a variety of things we see today and will see in the coming years. For example, an ONC-sponsored Institute of Medicine workshop series and 2011 summary report titled “Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care” may not be a household name; but several dozen citations since 2020 suggest to me that this work remains relevant today.

5. What would you say is the best or most interesting part of working for ONC?

ONC’s mission is, inherently, focused on taking health IT from where we are to where we could be. We tackle challenges that have never been solved before – like achieving seamless interoperability and exchange of health information nationwide. There’s always an opportunity at ONC to be creative and innovative in advancing our mission.

6. How would you characterize ONC’s success?

For me, ONC’s long-term success will be marked by two critical events within the health information ecosystem.

First, people in all roles within the health care and public health spheres will routinely use health IT to manage, use, and share health information consistent with individuals’ privacy preferences.

Second, the typical clinician, public health professional or patient using health IT will have reasonable confidence and proficiency with using the technology — and a corresponding sense that its current capabilities or usability are good but could be even better with further innovation.

7. Tell us about a project you are currently working on and how it fits into ONC’s mission.

The information blocking statute is an important complement to privacy-protective laws, including the HIPAA Privacy Rule. The information blocking statute discourages those in a position to control availability of individuals’ health information from abusing that control for competitive advantage or their own convenience. I believe our work to issue regulations and conduct outreach focused on information blocking has increased individuals’ awareness that they have certain rights with respect to their electronic health information.

Our regulatory work also offers necessary reassurance that those who are subject to the  information blocking statutes will not be violating the law if they choose to engage in certain reasonable and necessary activities, such as respecting an individual’s request not to share information. (To learn more about what “information blocking” is — and isn’t — HealthIT.gov/informationblocking is a handy place to start.)

8. What are the core values of ONC that are important to you?

ONC’s vision speaks to me through a common goal: better health through data. To achieve this, there is a constant need for flexibility and change over time — within which ONC consistently values creativity, innovation, and practicality. We don’t change for the sake of change, but we don’t hesitate to innovate and change when that will better serve our mission.