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Protecting medical record information: start your research registries today.

Jennifer R Vates1, Jennifer L Ridge Hetrick, Kelly L Lavin

  • 1Department of Otolaryngology, University of Pittsburgh, Pittsburgh, Pennsylvania, USA. vatejr@upmc.edu

The Laryngoscope
|March 4, 2005
PubMed
Summary

The Health Insurance Portability and Accountability Act (HIPAA) privacy rule imposed significant costs, exceeding $30,888, for obtaining patient consent for clinical research data. This highlights the financial impact on research registries.

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Area of Science:

  • Health Services Research
  • Medical Informatics
  • Public Health Policy

Background:

  • The Health Insurance Portability and Accountability Act (HIPAA) of 1996 significantly altered health care practices and clinical research.
  • HIPAA's privacy rule mandates patient consent for using protected health information (PHI) in research, impacting access to existing data.
  • Clinical research registries, vital for practice-based learning and publications, face challenges due to these consent requirements.

Purpose of the Study:

  • To quantify the financial costs associated with HIPAA compliance for maintaining access to a clinical tumor registry.
  • To emphasize the importance of research registries for physicians' career-long work and scientific contribution.
  • To discuss the practical and financial implications of HIPAA on clinical research.

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Main Methods:

  • The study evaluated the direct costs incurred by a university otolaryngology department to comply with HIPAA's privacy rule.
  • This involved mailing informed consents to former patients for accessing historical clinical data in a tumor registry.
  • The process was undertaken to ensure continued use of aggregated data for research.

Main Results:

  • Compliance required mailing consents to 14,330 former patients.
  • The direct financial cost of this process exceeded $30,888.
  • These costs represent a significant barrier to accessing and utilizing historical clinical data for research.

Conclusions:

  • HIPAA compliance presents substantial financial and practical challenges for maintaining clinical research registries.
  • The study underscores the need for efficient solutions to balance patient privacy with the continuation of valuable medical research.
  • Protecting physicians' career-long research efforts necessitates addressing the impact of such regulations.