PDF icon Download PDF
Appl Clin Inform 2025; 16(02): 362-368
DOI: 10.1055/a-2499-4090
Case Report

The Honest Enterprise Research Broker: Facilitating Ethical, Efficient, and Secure Access to Health Data for Research

Michelle S. Keller
1   Division of General Internal Medicine, Department of Medicine, Cedars-Sinai Medical Center, Los Angeles, United States
2   Division of Informatics, Department of Biomedical Sciences, Cedars-Sinai Medical Center, Los Angeles, United States
,
Pamela Roberts
2   Division of Informatics, Department of Biomedical Sciences, Cedars-Sinai Medical Center, Los Angeles, United States
3   Department of Physical Medicine and Rehabilitation, Cedars-Sinai Medical Center, Los Angeles, United States
4   Department of Medical Affairs, Cedars-Sinai Medical Center, Los Angeles, United States
,
Kevin Japardi
5   Research Data Intelligence, Enterprise Information Systems, Cedars-Sinai Medical Center, Los Angeles, United States
,
Joseph E. Ebinger
6   Department of Cardiology, Sciences, Cedars-Sinai Medical Center, Los Angeles, United States
,
Tod Davis
5   Research Data Intelligence, Enterprise Information Systems, Cedars-Sinai Medical Center, Los Angeles, United States
,
Joshua Pevnick
1   Division of General Internal Medicine, Department of Medicine, Cedars-Sinai Medical Center, Los Angeles, United States
2   Division of Informatics, Department of Biomedical Sciences, Cedars-Sinai Medical Center, Los Angeles, United States
,
Sivathmika Chevvuri
5   Research Data Intelligence, Enterprise Information Systems, Cedars-Sinai Medical Center, Los Angeles, United States
,
Hudson Stuck
5   Research Data Intelligence, Enterprise Information Systems, Cedars-Sinai Medical Center, Los Angeles, United States
,
Shao-Chi Huang
5   Research Data Intelligence, Enterprise Information Systems, Cedars-Sinai Medical Center, Los Angeles, United States
,
Edward Kowalewski
5   Research Data Intelligence, Enterprise Information Systems, Cedars-Sinai Medical Center, Los Angeles, United States
,
Ashley Lin
5   Research Data Intelligence, Enterprise Information Systems, Cedars-Sinai Medical Center, Los Angeles, United States
,
Andrew Sanapanya
5   Research Data Intelligence, Enterprise Information Systems, Cedars-Sinai Medical Center, Los Angeles, United States
,
Alan Tomines
5   Research Data Intelligence, Enterprise Information Systems, Cedars-Sinai Medical Center, Los Angeles, United States
,
Spencer SooHoo
2   Division of Informatics, Department of Biomedical Sciences, Cedars-Sinai Medical Center, Los Angeles, United States
› Author Affiliations
Funding This study was supported by the U.S. Department of Health and Human Services, National Institutes of Health, National Center for Advancing Translational Sciences (grant no.: UL1TR001881).
› Further Information
Also available ateRef
   Permissions and Reprints
Preview

Abstract

Background Health systems generate and store vast amounts of clinical data, requiring structured processes to ensure that secondary use of the data is available to researchers in an efficient, ethical, and secure manner.

Objective We describe a process to provide data to health system researchers at a large, multi-hospital health system that balances efficiency with security and ethics.

Methods The Honest Enterprise Research Broker (HERB) Committee has enacted a systematic process to deliver investigators requesting data, using pre-written SQL code, when possible, to increase efficiency, providing a suite of self-service tools for cohort size estimation, and assessing the security and privacy of data leaving the institution. We evaluated the number of extracts per year, the average time to delivery of the data extract, and user satisfaction with the process.

Results From 2018 to 2023, the HERB Committee completed 487 data extracts. The number of requests increased from 51 in 2018 to 121 in 2023. Even as the number of extracts increased, the number of hours per extract decreased from 12.5 in 2018 to 9 in 2023. User satisfaction surveys found a high degree of satisfaction with the process.

Conclusion Through a process of continuous improvement, the HERB Committee has developed an expedient process to support the research needs of a large academic multi-hospital health system.

Keywords

clinical data access - health system - honest broker

Protection of Human and Animal Subjects

No human subjects were involved in this analysis.


Supplementary Material



Publication History

Received: 28 May 2024

Accepted: 09 December 2024

Article published online:
30 April 2025

© 2025. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 

  • References

  • 1 Ouyang D, He B, Ghorbani A. et al. Video-based AI for beat-to-beat assessment of cardiac function. Nature 2020; 580 (7802) 252-256
    PubMedSearch in Google Scholar
  • 2 Govindappagari S, Greene N, Burwick R, Wong MS, Gregory KD. Maternal and neonatal morbidity after 4 and 6 hours of protracted active labor in nulliparous term pregnancies. Obstet Gynecol 2020; 135 (01) 185-193
    PubMedSearch in Google Scholar
  • 3 Feldman K, Duncan RG, Nguyen A. et al. Will Apple devices' passive atrial fibrillation detection prevent strokes? Estimating the proportion of high-risk actionable patients with real-world user data. J Am Med Inform Assoc 2022; 29 (06) 1040-1049
    PubMedSearch in Google Scholar
  • 4 Claerhout B, Kalra D, Mueller C. et al. Federated electronic health records research technology to support clinical trial protocol optimization: evidence from EHR4CR and the InSite platform. J Biomed Inform 2019; 90: 103090
    PubMedSearch in Google Scholar
  • 5 Satterfield BA, Dikilitas O, Kullo IJ. Leveraging the electronic health record to address the COVID-19 pandemic. Mayo Clin Proc 2021; 96 (06) 1592-1608
    PubMedSearch in Google Scholar
  • 6 Lee LM. Ethics and subsequent use of electronic health record data. J Biomed Inform 2017; 71: 143-146
    PubMedSearch in Google Scholar
  • 7 U. S. Department of Health and Human Services. . Summary of the HIPAA Privacy Rule. Washington, DC: 2022
  • 8 Office for Human Research Protections USDoHaHS. . Attachment D: FAQ's Terms and Recommendations on Informed Consent and Research Use of Biospecimens. In: SACHRP Recommendations. Washington, D.C.: U.S. Department of Health and Human Services; 2011
  • 9 Boyd AD, Hosner C, Hunscher DA, Athey BD, Clauw DJ, Green LA. An “Honest Broker” mechanism to maintain privacy for patient care and academic medical research. Int J Med Inform 2007; 76 (5–6): 407-411
    PubMedSearch in Google Scholar
  • 10 Obeid JS, Beskow LM, Rape M. et al. A survey of practices for the use of electronic health records to support research recruitment. J Clin Transl Sci 2017; 1 (04) 246-252
    PubMedSearch in Google Scholar
  • 11 Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 2009; 42 (02) 377-381
    CrossrefPubMedSearch in Google Scholar
  • 12 Rt PAH, Minor BL, Elliott V. , et al The REDCap consortium. Building an international community of software partners. J Biomed Inform 2019; 95: 103208
    CrossrefPubMedSearch in Google Scholar
  • 13 Mukherjee S, Jenders RA, Delta S. Designing an innovative data architecture for the Los Angeles Data Resource (LADR). Stud Health Technol Inform 2015; 216: 1055
    PubMedSearch in Google Scholar
  • 14 Bell DS SS, Jenders R, Fu P, Lee J, Patel A, Zachariah M, Masys MD. . The Los Angeles Data Resource (LADR): A Comprehensive Regional Data Resource for Research. AMIA Joint Summits on Translational Science; April 10, 2014 2014
    PubMed
  • 15 Rothstein MA. Is deidentification sufficient to protect health privacy in research?. Am J Bioeth 2010; 10 (09) 3-11
    CrossrefPubMedSearch in Google Scholar
  • 16 Benitez K, Malin B. Evaluating re-identification risks with respect to the HIPAA privacy rule. J Am Med Inform Assoc 2010; 17 (02) 169-177
    CrossrefPubMedSearch in Google Scholar
  • 17 Patel AA, Gilbertson JR, Showe LC. et al; PCABC. A novel cross-disciplinary multi-institute approach to translational cancer research: lessons learned from Pennsylvania Cancer Alliance Bioinformatics Consortium (PCABC). Cancer Inform 2007; 3: 255-274
    PubMedSearch in Google Scholar
  • 18 Singh K, Jahnke I, Mosa ACalyam P. The winding road of requesting healthcare data for analytics purposes: using the one-interview mental model method for improving services of health data governance and big data request processes. J Bus Anal 2023; 6(1): 1-18
    PubMedSearch in Google Scholar