December 18, 2023
None
National Cancer Institute (NCI)
Purpose
The National Cancer Institute's (NCI’s) Childhood Cancer Data Initiative (CCDI) is interested in understanding the current capabilities across cancer research, and healthcare enterprise, including vendors and developers for the automated entry and extraction of data from Electronic Health Records (EHRs).
Background
Childhood cancer patients comprise a special and understudied population of cancer patients. Approximately 16,000 childhood cancer patients are diagnosed in the United States annually, which represents just a fraction of the 1.9 million new cancer cases diagnosed each year. Due to their rare nature, it has been challenging to collect substantial and vital information on a large scale to study and understand the needs for this unique population. The NCI launched the CCDI in 2019 to collect, analyze, and share data to address the burden of cancer in children, adolescents, and young adults (AYA). CCDI is building a federated Data Ecosystem to connect these data with a network of resources and tools for access and analysis. The CCDI Hub serves as a gateway for users to access data, information, and links to CCDI platforms, tools, and resources within the Data Ecosystem.
EHR data, traditionally used for patient care and public health surveillance reporting, can offer meaningful opportunities for data use in clinical research, and facilitate data-driven analytics. EHRs represent an underutilized but valuable source of data. When appropriately processed (harmonized and de-identified), can significantly enhance the data ecosystem, thereby supporting clinical research and therapeutic advancement. The structured data obtained through automated extraction from EHRs could also be used to populate clinical trial Case Report Forms (CRFs) in Clinical Data Management Systems (CDMS). This integration could reduce or eliminate manual duplicate data entry, improve data quality, reduce human error, and improve clinical trial operational efficiency.
Information Requested
The CCDI is seeking information on existing capabilities for automated EHR data ingestion, transformation, and harmonization – at the point of care. The focus includes understanding existing tools, clinical workflows, platforms, or planned approaches to prospectively enter the data into EHRs in a pre-structured (e.g., Flow sheets, Smart Forms) format at the time of data collection. CCDI is planning a Coordinated Pediatric and Young Adult Rare Cancer Initiative, a natural history study focusing on pediatric patients with ultra-rare cancers. This project could serve as a test case to extract data from EHRs which can automatically populate CRFs, disease registries etc. Feedback is also requested on the extent to which data capturing, extraction and transformation tools developed and deployed to support cancer research on adult patients and more common diseases can also support pediatric and rare cancer research and how to address the gap where those tools fall short.
Respondents are encouraged to share insights based on their organization's capabilities, tools, workflow modifications, or approaches for systematic and real-time EHR data extraction, or their use of commercial tools, which could assist NCI in exploring effective EHR data extraction approaches.
How to Submit a Response
To respond to this Request for Information (RFI), please submit your response via this webform on “Current Capabilities in Automated Data Entry & Extraction from Electronic Health Records” by February 29, 2024. The webform is the preferred mode of input, but a file with associated answers may also be uploaded on the collection website. Responses can be submitted anonymously, and there is no requirement to associate names with them.
Through this RFI notice, NCI invites participation from stakeholders across the cancer research and health care enterprise including vendors and developers. All participants are encouraged to respond to as many survey questions as they are able, irrespective of their role in the enterprise. Participation is voluntary and respondents are cautioned not to include any proprietary, classified, confidential, or sensitive information. Respondents are advised that the Government is under no obligation to acknowledge receipt of the information received or provide feedback to respondents with respect to any information submitted. The Government reserves the right to use any non-proprietary technical information in any resultant solicitation(s).
This RFI notice is for information and planning purposes only and should not be construed as a solicitation or an obligation on the part of the Federal Government, the National Institutes of Health, or NCI. NCI will use the information submitted in response to this RFI at its discretion and will not provide comments to any individual responder's submission. All individual responses will remain confidential. Any identifiers (e.g., names, institutions, e-mail addresses, etc.) will be removed when responses are compiled. Only the processed, anonymized results will be shared internally with the National Institutes of Health (NIH) staff members and any member of scientific working groups convened by the NCI and NIH, as appropriate.The information provided will be analyzed and may also be shared publicly or appear in reports, NIH websites, or in the development of future funding opportunities. The NIH does not intend to make any type of award based on responses to this RFI. No monetary awards will be made to pay for the preparation of any information submitted or for the Government’s use of such information. No basis for claims against the U.S. Government shall arise as a result of a response to this RFI or from the Government’s use of such information.
The NCI looks forward to your input, and we hope that you will share this RFI document with your colleagues for their input.
Subhashini Jagu, Ph.D.
National Cancer Institute (NCI)
Telephone: 2407813325
Email: jagus@nih.gov
and Human Services (HHS)
