January CHRI Research Bulletin

Research Bulletin

News from the Child Health Research Institute

January 2023

Child Health Research Institute Appoints Dr. Ellen Kerns to Optimize Members’ Research Efforts through Informatics

The recent appointment of Ellen Kerns, PhD, as Director of Research Informatics will provide members of the Child Health Research Institute (CHRI) with a new source of technical expertise for their research projects. Dr. Kerns earned her PhD in Biomedical Informatics from UNMC in 2021, and she currently serves as an assistant professor, Division of Child Health Policy, in the UNMC Department of Pediatrics and as a data scientist at Children’s Hospital & Medical Center. Her role in CHRI will be to assist researchers in improving their projects through informatics. i.e., the study of the organization and use of information.

Informatics empowers scientists to use technology and data most efficiently in their research endeavors. “Improvement can take the form of automating a process that had been done manually,” Dr. Kerns said, “It can also be through assistance with the usage and management of data.”

Dr. Kerns will lead a team of three: a data navigator who will assist researchers in identifying data resources of value to their projects, a database coordinator who will serve as a resource for using the EPIC electronic health record (EHR) system for research projects, and a data analyst who will aid researchers in formatting their data to match the standards of national data repositories. CHRI members will be linked to appropriate assistance from this team when they submit a request for study support via the CHRI Pediatric Research Office’s online intake form. “There will be many occasions when researchers will not realize that their projects could be improved by informatics until we let them know,” Dr. Kerns said.

Recently Dr. Kerns was called in to help with a retrospective research study that was requiring its investigators to spend hours reviewing medical charts. Dr. Kerns identified that much of the data they were searching for in the charts could be pooled and extracted from the EHR. In another study, in which Dr. Kerns was the primary investigator, she was able to automate the study participant registration and follow-up process. In these instances, the streamlining that took place through informatics enabled the study personnel to apply their efforts to more meaningful aspects of the research. Using automation also eliminates inevitable human transcription errors.

Dr. Kerns also intends to help CHRI researchers capitalize on multi-institutional data sources that are already available through Children’s and UNMC. Dr. Kerns commented, “We hope to lower the bar to accessing things like clinical registries where we're contributing local data but we’re not necessarily using it yet. This team will help people use existing data sources to generate collaborative publications as well as preliminary data and enrollment feasibility for extramural grants.”

CHRI is among the first UNMC entities to invest in a role of this kind, and its leaders are excited for the impact that Dr. Kerns and her team will have. Ann Anderson Berry, MD, PhD, CHRI executive director, said, “At CHRI, we want to help our members work smarter, not harder, and I believe this role will empower our scientists to pursue more and larger opportunities.”

Dr. Steven Yeh Awarded $50k

CHRI DEI Health Equity Grant

Steven Yeh, MD, professor, UNMC Department of Ophthalmology; director, Retina and Uveitis Service at the Truhlsen Eye Institute; and Stanley Truhlsen Jr. Chair in Ophthalmology, has been awarded a $50k Health Equity Grant from the CHRI. Dr. Yeh and his team research high consequence childhood illnesses in Sierra Leone, utilizing ophthalmic imaging surveillance techniques and engagement with members of the community.

CHRI is committed to support projects that advance the principles of Diversity, Equity and Inclusion in pediatric research. Diversity in Research was CHRI’s institute-wide point-of-emphasis in 2022. Dr. Yeh is excited for the opportunities this funding will create. “We can’t thank you enough for the funding support and hope this will be a springboard for future programs,” he said.

Top row, Dr. Baraldi Cunha; middle row, Dr. Delair and Taija Hahka; bottom row, Drs. Pratt and Wei.

CHRI Grant Awardees Announced

Congratulations to the following CHRI members who received funds from CHRI during the past application cycle:

Andrea Baraldi Cunha, PhD, assistant professor, Department of Physical Therapy at the UNMC Munroe-Meyer Institute, was awarded $49,635 for research on modified ride-on cars usage and impact on global development in children with mobility delays.

Shirley Delair, MD, MPH, UNMC Pediatric Infectious Diseases Division Chief, was awarded $31,821 for her research on the impact of maternal vertically transmitted infections on stillbirths in central Nigeria.

Taija Hahka, UNMC Integrative Physiology & Molecular Medicine PhD candidate, was awarded $14,199 for her research project, "A Mighty Resolve Study: Protective Effects of Pro-Resolving Mediators on Mitochondrial Function in Hypertensive Placenta."

Laura Pratt, MD, assistant professor, UNMC Division of Pediatric Rheumatology, was awarded $15,000 for her research, "Determining Clinical Gait Analyses Sensitivity in Juvenile Idiopathic Arthritis: A Pilot Study."

Xin Wei, PhD, research assistant professor, UNMC Department of Pharmaceutical Sciences was awarded $50,000 for the development of a novel local drug delivery system for the treatment of pre-eclampsia.

Dr. Aleisha Nabower Receives

Funding for Study from PCORI

CHRI congratulates Dr. Aleisha Nabower on receiving extramural funding as the local principal investigator for a new study, “Patient and Family Centered (PFC) I-PASS LISTEN Study: Language, Inclusion, Safety, and Teamwork for Equity Now.” The grant is being awarded by the Patient-Centered Outcomes Research Institute (PCORI). Dr. Nabower kindly responded to the following questions about the planned research for the Research Bulletin:

What other institutions are you partnering with in this research?

There are eight other hospitals participating in this study. It is led by Boston Children’s Hospital, with other sites including: Nationwide Children’s, UPMC Children’s Hospital of Pittsburgh, UCSF Benioff Children’s Hospital of Oakland, Northwest Texas Healthcare System, Children’s of Alabama, Children’s Hospital Los Angeles and Children’s Hospital at Montefiore.

Who will be involved in the investigative team here at Children’s?

The investigative team at Children’s will include myself and Christopher Edwards, MD, associate professor, Division of Hospital Medicine, UNMC Department of Pediatrics, along with a nurse and a research assistant who have not yet been hired to join the project. We would love to include learners on the project as well.

This study addresses how hospital personnel communicate with patients and families who have limited English proficiency. What approaches will be evaluated?

This study will evaluate current practice; implementation of the IPASS system – a structured family-centered rounds communication approach which has previously been published specific to overall patients; and IPASS+, which will be the IPASS system plus cultural humility training, guidance on interpreter use, techniques for empathic communication and creation of psychological safety.

What kinds of feedback and/or outcomes will you track in the study?

This study will collect information on adverse events both noted in chart review or from staff or family safety reports. Families will also be surveyed on their hospital experience, perception of the safety climate and perceived discrimination. Data will also be collected through direct observation of our communication with families. We will also obtain participant in-process evaluation to inform the implementation of this intervention at other sites.

How do you hope the knowledge gained through this study will ultimately benefit patients and/or providers?

We hope that knowledge from this study will form the best practice recommendations that healthcare systems and individual providers can implement to improve communication and decrease the healthcare disparities in patients and families who speak languages other than English.

CHRI Priorities & Activities:

Update from Executive Director Ann Anderson Berry, MD, PhD

The start of a new year is an exciting time to assess progress, make plans and reinvest in yourself and your research endeavors. Here at CHRI we are doing the same – evaluating ourselves and how we are doing in executing our strategic plan and how our efforts are serving our members in their goals for internal and extramural funding applications, success in funding and publications, as well as other research opportunities.

I am thankful for a dedicated team at CHRI and in the Pediatric Research Office (PRO) who ensure we can continue to progress with these goals. Our team of scientific writers, statisticians, pre- and post-award support, coordinators and, new this year, a biomedical informatics data core are all here to help you succeed. If you have questions about study design, possibilities for support or other needs, please reach out. We are excited to help you launch your next study and will help you explore options for funding sources as well.

For the year 2023, we will continue to emphasize Diversity Equity Inclusion and Accessibility (DEIA) as a key theme in everything we do. You will have the opportunity to participate in our Journal club this winter. We will be reading The Immortal Life of Henrietta Lacks. Please look for the meeting invitation and join our three conversations for this three-part book.

We will also be offering an application for a DEIA Research Grant again this spring. This is a great way to take a different lens to your current research, and we welcome all applicants.

In order to hone your academic skills, we will be offering the Pediatric Academic Workshop this winter as well. Watch for details regarding dates and registration coming soon. This in- person event will be a great chance to meet fellow researchers and learn from some great academics as well.

Another underutilized resource is the Pediatric Writing Group led by Eric Peeples, MD, PhD, associate professor, Division of Neonatology, UNMC Department of Pediatrics. This is a great opportunity to get valuable feedback on your grants, abstracts and papers in progress. Please watch your emails for details for the monthly meetings.

We are developing several mentoring programs for early career investigators within CHRI. If you are interested in joining this program in the future, please let us know as well. We will be focusing on 5-year plans for your research career, developing and meeting writing goals, preparing extramural submissions and using our internal review resources as keys for funding success.

It’s time to start thinking about supporting Summer Undergraduate Research Program (SURP) and Medical Student Summer Research Program (MSSRP) students as well. If you have a project for one of these students and need to make a connection, please contact Jackie Ostronic, and we will connect you to the right person to get a match made. These deadlines come up quickly, so it’s important to start early in this process.

Best wishes for a happy, healthy and productive New Year! May all your hypothesis be supported, your grants be funded and all of your papers be accepted!

Ann

NIH Data Management and Sharing Reminder

The following is a message sent from Rebekah Rasooly, PhD, director, Division of Extramual Activities, Eunice Kennedy Shriver National Institute of Child Health and Human Development -

NIH is implementing a new Data Management and Sharing (DMS) Policy (NOT-OD-21-013 [grants.nih.gov ]) that affects applications as of January 25, 2023. We want to remind the NICHD researcher community of what is expected and make you aware of some helpful resources that are available to you, as you navigate the new requirements.

Summary of the new policy:

Under the 2023 NIH DMS Policy, NIH requires all applicants proposing research that will generate scientific data to prepare a DMS Plan that describes how the scientific data will be managed and shared.

NIH expects researchers to maximize the appropriate sharing of scientific data, taking into account factors such as legal, ethical, or technical issues that may limit the extent of data sharing and preservation.
Under the new Policy’s definition of data sharing, sharing data only among a limited group of collaborators or sharing data only upon request will no longer be acceptable.

Definitions

Scientific data is defined as the “recorded factual material commonly accepted in the scientific community as of sufficient quality to validate and replicate research findings, regardless of whether the data are used to support scholarly publications”

Data sharing is defined as “making scientific data available for use by others (e.g., the larger research community, institutions, the broader public), for example, via an established repository”.

Requirements & Expectations:

Grant applications or contracts proposals with receipt dates on or after January 25, 2023 must include DMS Plans that address all six Elements of a Data Management and Sharing Plan (NOT-OD-21-014 [grants.nih.gov ]) if the proposed research will

generate scientific data.

Timing of data sharing: NIH expects researchers to share scientific data as soon as possible, and no later than the time of an associated publication, or the end of the award/support period, whichever comes first.

Use of data repositories: The Policy strongly encourages the use of established data repositories. The selection of a data repository will help researchers to determine many of the DMS Plan Elements, including metadata and associated documentation, standards, and persistent identifiers to support findability of shared scientific data.

Plan Approval and Monitoring: The DMS Plan will be reviewed and approved by NIH prior to funding and the Plan will become a Term and Condition of the award. Awardees will be required to comply with their approved DMS Plan and any approved updates and to report on progress at regular reporting intervals (e.g., annual Research Performance Progress Report (RPPR)).

Helpful resources that may be useful for you:

Tips for Writing a DMS Plan [nichd.nih.gov]: NICHD-created resource to help

researchers develop their DMS Plans, including some information to help you develop each element in the DMS Plan.

NIH: https://sharing.nih.gov/[sharing.nih.gov] (also see the attached flyer [sharing.nih.gov ]) – including some examples of plans, tools to help plan your budget, and methods for selecting data repositories

NICHD: https://www.nichd.nih.gov/about/org/od/odss#resources . [nichd.nih.gov ] COMING SOON: Examples of sharing plans for research on model organisms, survey data and human clinical & genomics data!

CHRI Member Portal Screenshot

CHRI Member Portal Reminder

As a reminder, CHRI Member Portal is a gated site where members can access the resources and services available exclusively to them. This includes in-depth information about:

Engaging with the Pediatric Research Office (PRO) for clinical studies
Applying for CHRI and PCRG grant funding
Resources for grant writing and a grant opportunities calendar (NIH and foundations)
Viewing recordings of past CHRI events
Instructions and request forms for CHRI services (biostats, grant writing, data requests, PRO intake form)
CHRI Templates (posters, PowerPoints, etc.)

The CHRI Member Portal can be accessed by clicking here. If you have a UNMC or Nebraska Medicine email address, you can log in by using the username and password associated with your UNMC or Nebraska Medicine accounts. If you do not have a UNMC or Nebraska Medicine email address, our office will send you information on how to create an account, and you will designate your own password. If you have not received account creation information or need your password reset, email [email protected], and a member of our team will help you. We welcome our members’ ideas on additional features to the portal.