User-Centered Design, Experience, and Usability of an Electronic Consent User Interface to Facilitate Informed Decision-Making in an HIV Clinic

Abstract

Health information exchange is the electronic accessibility and transferability of patient medical records across various health care settings and providers. In some states, patients have to formally give consent to allow their medical records to be electronically shared. The purpose of this study was to apply a novel user-centered, multi-step, multi-framework approach to design and test an electronic consent user interface, so patients with HIV can make more informed decisions about electronically sharing their health information. This study consisted of two steps. Step one was a cross-sectional, descriptive, qualitative study that employed user-centric design interviews to create the user interface. This informed step two. Step two consisted of a one group post-test to examine perceptions of usefulness, ease of use, preference and comprehension of a health information exchange electronic consent user interface. More than half of the study population had college experience, but challenges remained with overall comprehension regarding consent. The user interface was not independently successful, suggesting that in addition to an electronic consent user interface, human interaction may also be necessary to address the complexities associated with consenting to electronically share health information. Comprehension is a key factor in the ability to make informed decisions.

Electronic informed consent: the need to redesign the consent process for the digital age

“…1 Subsequent case series have demonstrated a broader clinical spectrum, including patients with raised ESR, CRP and CK. 2,3 Pain was a universal feature in the initial report, but in one large series pain was reported in just 27% of cases. 4 Furthermore, several recent case series have reported focal myositis in multiple adjacent muscles.…”

“…2 Microscopically, focal myositis demonstrates variable myofibre sizes, focal fibrosis and inflammatory infiltrate with macrophages and T-lymphocytes. 2,3,6 These findings can overlap with the appearances of other causes of Figure 1 Pelvic magnetic resonance imaging (non-contrast) showing oedema and interstitial fluid in left adductor, iliopsoas and obturator muscles with hyperintensity on T2 fat suppression sequence. Both hips show advanced osteoarthritis.…”

“…There should however be a mutual understanding that affirmation of consent, whether done in writing or as an e‐authorisation, is merely a staging post in the consenting journey, as consent may be withdrawn or revised in the future. While the concept of providing eConsenting without the need for human interaction, for example, online consenting, might seem attractive in terms of time saving and convenience, clinical informed consent is currently best done with a human‐to‐human interaction component …”

“…the need for human interaction, for example, online consenting, might seem attractive in terms of time saving and convenience, clinical informed consent is currently best done with a human-to-human interaction component. 3 The informed consent should be sufficiently adaptable that the needs of the consentee and also the consenter are accommodated, across diverse settings. Most lay people's idea of clinical consent is framed within the context of either surgery or pharmaceutical clinical trials.…”

Utilization of an Animated Electronic Health Video to Increase Knowledge of Post- and Pre-Exposure Prophylaxis for HIV Among African American Women: Nationwide Cross-Sectional Survey (Preprint)

“…[12] Additionally, audio and graphical components used in these interventions can reach individuals with limited levels of literacy. [10,13] African American women are disproportionately affected by HIV in the United States and underrepresented in health research studies. [14] African American women account for 60% of all new HIV diagnoses among women, yet they do not engage in more sexual risk behaviors than their White and Latina counterparts.…”