Drawing Patients in with HIPAA in Comic Form Leah R. Eisenberg, JD, MA; Jim Pringnitz; Linda Hasadsri, MD, PhD; W. Edward Highsmith Jr., PhD; Devin Oglesbee, PhD; Rose Anderson Mayo Clinic
Description of the Research: A new approach to the HIPAA Notice of Privacy Practices is needed. In recent years, there has been a rise in the use of stylized, comic-style illustrations for patient education purposes. Graphic documents convey complex information in an engaging, accessible format. But can they work for a detailed legal document like HIPAA? Two illustrated HIPAA documents have been developed at our institution: the required Notice of Privacy Practices and an authorization to use and disclose personal health information for research purposes. The illustrated forms were developed as a multidisciplinary collaboration among design, illustration, ethics, research, and legal professionals, and they convey all the information required by the HIPAA statute. Although it is unclear
Additional Information: HIPAA forms, and even standard informed consent practices, rarely result in informed patients. However, pictures increase the likelihood that medical information will be read. We will share the process of developing, prototyping, and incorporating patient feedback for several illustrated medical forms, including a Notice of Privacy Practices and consent forms for participation. POSTeR 40
Ethical Challenges and Solutions Involved in Reviewing a Protocol with Sex Offenders as Participants: The Concerns and Solutions Identified for Protecting a Highly Controversial Population Hila Berger, MPH, CIP; Amy Krenzer, CIP; Nicole Bryan, PhD Montclair State University
Problem Statement: In reviewing research, the three basic tenets IRBs are expected to abide by are beneficence, justice, and respect for persons. The IRB was challenged in meeting these tenets during the course of a recent review. Given the highlycontroversial participant population of sex offenders, and the methodology initially proposed, there were a multitude of ethical challenges uncovered that required unique solutions. The protocol presented to the IRB was developed to investigate the use of networked technologies and communications for the purpose of human trafficking. To do so, the researchers proposed recruiting “Johns,” or individuals convicted of soliciting sex, and interviewing them to discover how they use the internet and networked technologies to find victims online. Ultimately, the research intends to provide technology-based tools for combating trafficking of minors. So the question for the IRB was how to go about protecting “Johns” while protecting the potential victims and meeting the criteria for approval. Description of the Research: When working with participants who are convicted of a crime that has high
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Problem Statement: The Health Information Portability and Accountability Act (HIPAA) was enacted in 1996, in part, to provide a framework for protecting the privacy, security, and availability of patient medical information. One section of HIPAA, the Privacy Rule, requires covered health care institutions to provide patients with a Notice of Privacy Practices. This notice must contain information about how the covered entity may use protected health information. The Privacy Rule divides uses and disclosures of personal health information into two general categories: those that require patient authorization and those that do not (there are also a few special circumstances where patient consent is not required, but objections are honored). In theory, the Notice of Privacy Practices provides crucial information to patients about who may have access to their protected health information. In practice, though, there is evidence that many HIPAA documents are written at a twelfth-grade level and above, while the average American reads at an eighth-grade level. Consequently, many patients do not understand the notices, and the availability of the forms does nothing to increase their knowledge about their privacy rights. From an ethical standpoint, it is not appropriate to consider patient authorization adequate when comprehension is in question. The goal of HIPAA is to help patients understand their rights, not to add another pro forma document to the health care experience.
whether illustrations can satisfy legal requirements to the satisfaction of the IRB, preliminary patient feedback reveals that 80% of adults presented with graphic forms preferred them to their traditional counterparts. If this patient preference correlates with a better understanding of the HIPAA privacy information, and increased retention of the materials, there is a legitimate role for graphic forms in the health care setting.
Digital version fo the Conference Guide for the 2013 Advancing Ethical Research Conference