Maintenance Notice

Due to necessary scheduled maintenance, the JMIR Publications website will be unavailable from Wednesday, July 01, 2020 at 8:00 PM to 10:00 PM EST. We apologize in advance for any inconvenience this may cause you.

Who will be affected?

Accepted for/Published in: JMIR Formative Research

Date Submitted: Feb 10, 2023
Open Peer Review Period: Feb 10, 2023 - Apr 7, 2023
Date Accepted: Mar 6, 2024
(closed for review but you can still tweet)

The final, peer-reviewed published version of this preprint can be found here:

Regulatory Issues in Electronic Health Records for Adolescent HIV Research: Strategies and Lessons Learned

Green SS, Lee SJ, Chahin S, Pooler-Burgess M, Green Jones M, Gurung S, Outlaw A, Naar S

Regulatory Issues in Electronic Health Records for Adolescent HIV Research: Strategies and Lessons Learned

JMIR Form Res 2024;8:e46420

DOI: 10.2196/46420

PMID: 38696775

PMCID: 11099806

Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.

Regulatory Issues in Utilization of Electronic Health Records for Multi-site Pragmatic Trials: Findings from the Adolescent Trials Network for HIV/AIDS Interventions Protocol 162b

  • Sara Shaw Green; 
  • Sung-Jae Lee; 
  • Samantha Chahin; 
  • Meardith Pooler-Burgess; 
  • Monique Green Jones; 
  • Sitaji Gurung; 
  • Angulique Outlaw; 
  • Sylvie Naar

ABSTRACT

Electronic health records are a cost-effective approach to providing necessary foundations for clinical trial research. The ability to utilize electronic health records in real-world clinical settings allows for pragmatic approaches to intervention studies with the emerging adult HIV population within these settings, however the regulatory components related to the utilization of electronic health records data, in multi-site clinical trials poses unique challenges. As part of the larger ATN162b study that evaluated clinic level outcomes of an HIV treatment and PrEP services intervention to improve retention within the emerging adult HIV population, the objective of this paper is to highlight the regulatory process and challenges in the implementation of a multi-site pragmatic trial utilizing electronic health records. As part of the larger ATN162b study that evaluated clinic level outcomes of an HIV treatment and PrEP services intervention to improve retention within the emerging adult HIV population, the objective of this paper is to highlight the regulatory process and challenges in the implementation of a multi-site pragmatic trial utilizing electronic health records. The process for engaging in multi-site clinical trial studies utilizing electronic health record data is a multi step, collaborative effort. Considerations surrounding the necessity of data use agreements, reliance agreements, external IRB review and engagement with clinical sites were a foremost consideration to ensure successful implementation and adherence to pragmatic trial timelines and outcomes. As part of the larger ATN162b study that evaluated clinic level outcomes of an HIV treatment and PrEP services intervention to improve retention within the emerging adult HIV population, the objective of this paper is to highlight the regulatory process and challenges in the implementation of a multi-site pragmatic trial utilizing electronic health records. The process for engaging in multi-site clinical trial studies utilizing electronic health record data is a multi step, collaborative effort. Considerations surrounding the necessity of data use agreements, reliance agreements, external IRB review and engagement with clinical sites were a foremost consideration to ensure successful implementation and adherence to pragmatic trial timelines and outcomes.


 Citation

Please cite as:

Green SS, Lee SJ, Chahin S, Pooler-Burgess M, Green Jones M, Gurung S, Outlaw A, Naar S

Regulatory Issues in Electronic Health Records for Adolescent HIV Research: Strategies and Lessons Learned

JMIR Form Res 2024;8:e46420

DOI: 10.2196/46420

PMID: 38696775

PMCID: 11099806

Download PDF


Request queued. Please wait while the file is being generated. It may take some time.

© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.