Digital informed consent may better inform individuals about health research and increase participation. In the United States and elsewhere, minorities and rural populations are underrepresented in health research and may benefit from well-designed electronic informed consent (eIC). Seven focus groups were conducted with 50 Caucasian, African American, and rural patients in the United States. Participants were asked their preferences for a paper versus electronic informed consent document. Participants found the e-version easier to use, more interesting, and better for understanding. Minority participants emphasized limited access, computer literacy, and trust barriers to eIC. Rural participants were concerned about accessibility, connectivity, privacy, and confidentiality. People see value in electronic consenting. Researchers should consider barriers to eIC among underrepresented populations before recruitment.
Purpose Interactive multimedia’s potential to improve biobank informed consent has yet to be investigated. The aim of this study was to test the separate effectiveness of interactivity and multimedia at improving participant understanding and confidence of understanding of informed consent, compared to a standard, face-to-face (F2F) biobank consent process. Methods A 2 (F2F versus multimedia) × 2 (standard versus enhanced interactivity) experimental design was used with 200 patients randomly assigned to receive informed consent. All patients received the same information provided in the Biobank’s 9-page consent document. Results Interactivity (F(1,196)=7.56, p=0.007, partial η2=0.037) and Media (F(1,196)=4.27, p=0.04, partial η2=0.021) independently improved participants’ understanding of the Biobank consent. Interactivity (F(1,196) = 6.793, p = 0.01, partial η2=0.033), but not Media (F(1,196) = 0.455, n.s.), resulted in increased participant confidence in their understanding of the Biobank’s consent. Patients took more time to complete the multimedia (M=18.2 min.) than the F2F (M=12.6 min.) conditions. Conclusion This study demonstrated that interactivity and multimedia each can be effective at promoting individuals’ understanding and confidence in understanding of a biobank consent, albeit with additional time investment. Researchers should not assume that multimedia is inherently interactive, but rather separate the two constructs when studying electronic consent.
Biobanks face unique challenges obtaining consent from biospecimen contributors. Electronic consent (e-consent) presents one option for streamlining the biobank consent process, and improving contributor understanding of consent information. An e-mail survey was conducted to establish the extent of current biobank e-consent and interest in future use of e-consent. A total of 235 biobanks were surveyed and 65 (28%) responded with a fully completed survey. Few of these 65 biobanks (8%) reported using e-consent; however, the majority (75%) were interested in e-consent. Many (48%) biobanks were in discussions with institutional stakeholders about using e-consent in the future. Anticipated benefits of e-consent included improved efficiency and increased enrollment. Perceived barriers to e-consent adoption included lack of funding, issues with human subjects approval, and factors affecting user uptake (e.g., computer literacy). Biobanks using e-consent reported cost, technology issues, and difficulty training staff as barriers to e-consent adoption. Traditional consenting methods (e.g., face-to-face, phone, and mail) continued to be used at biobanks reporting use of e-consent. The survey results suggest strong interest in e-consent among U.S. biobanks, and a need to consider a range of implementation issues, including user preferences and receptivity; institutional and technical support; integration with clinical data networks; electronic signature capture; and what type of e-consent to implement. Biobanks will need evidence-based guidance for purposes of addressing these issues, so that e-consent processes enhance efficiency, as well as contributor receptivity, understanding, and trust.
Colorectal cancer (CRC) is the third leading cause of cancer mortality among women. Screening can prevent the development of CRC or diagnose early disease when it can effectively be cured, however existing screening methods are underutilized. In this study, we examined the utility of an updated Health Belief Model to explain CRC screening adherence. The present study included 280 older women seeking routine mammography at a large, urban breast diagnostic facility. Overall, 50% of women were adherent to CRC screening guidelines. Multiple regression indicated that self-efficacy, physician recommendation, perceived benefits of and perceived barriers to screening accounted for 40% of variance in CRC screening adherence. However, there was no evidence for two mediational models with perceived benefits and perceived barriers as the primary mechanisms driving adherence to CRC screening. These findings may inform both future theoretical investigations as well as clinical interventions designed to increase CRC screening behavior.
The Americans with Disabilities Act (ADA), and Sections 504 and 508 of the Rehabilitation Act, prohibit discrimination against people with disabilities in all aspects of daily life, including education, work, and access to places of public accommodations. Increasingly, these antidiscrimination laws are used by persons with disabilities to ensure equal access to e-commerce, and to private and public Internet websites. To help assess the impact of the anti-discrimination mandate for educational communities, this study examined 157 website home pages of Iowa public high schools (52% of high schools in Iowa) in terms of their electronic accessibility for persons with disabilities. We predicted that accessibility problems would limit students and others in obtaining information from the web pages as well as limiting ability to navigate to other web pages. Findings show that although many web pages examined included information in accessible formats, none of the home pages met World Wide Web Consortium (W3C) standards for accessibility. The most frequent accessibility problem was lack of alternative text (ALT tags) for graphics. Technical sophistication built into pages was found to reduce accessibility. Implications are discussed for schools and educational institutions, and for laws, policies, and procedures on website accessibility.
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