Carefully designed infographics can be useful tools to support comprehension and thus help patients engage with their own health data. Infographics may contribute to patients' ability to participate in the Learning Health System through participation in the development of a robust data utility, use of clinical communication tools for health self-management, and involvement in building knowledge through patient-reported outcomes.
Facebook advertisements were utilized to recruit nulliparous women in the first 20 weeks of pregnancy for an online survey about their childbirth preferences. A campaign of ads was targeted to women, aged 18-44, residing in the United States. The ads were viewed 10,577,381 times by 7,248,985 unique Facebook users over 18 weeks in 2011. The ad campaign yielded 6,094 clicks by 5,963 unique users at a mean cost of $0.63 per click and a unique click-through rate of 0.08%. Of those who clicked through to the study site, eighteen percent (18%, n = 1,075) consented to participate. The participant pool was reduced to 344 women after application of strict eligibility criteria. Participants represented 43 states and the District of Columbia, their mean age was 20.9 years (Mdn 19.0, SD 4.0), and their mean weeks’ gestation was 11.5 (SD 5.8). The campaign cost was $3,821.81 or $11.11 per eligible participant.
Pregnant women need high-quality, timely information for self-management. The extent to which digital education resources meet their needs is unclear. This study elucidated how low-income pregnant women characterize their digital information needs and seeking processes and identified barriers/facilitators to meeting them. Focus groups bookending field-testing of a digital maternity education resource elicited barriers to and facilitators of Internet access, Internet use patterns, preferred methods to access information, and explored acceptability and desired features of online resources. Content analysis was used to analyze transcripts and six thematic categories were identified. Digital maternity education resources should be flexible, easily shared with loved ones, and responsive to users' experiences. Although helpful, digital resources are insufficient to meet pregnant women's need for social support.
Background: Hypertension is the most important modifiable stroke risk factor, but blood pressure (BP) remains poorly controlled after stroke, especially among Black and Hispanic patients. We tested the feasibility of TASC (Telehealth After Stroke Care), a post-acute stroke care model integrating nurse-supported home BP telemonitoring, tailored infographics, and multidisciplinary team video visits. Methods: Acute stroke patients with hypertension were randomized at discharge to usual care or usual care with TASC. Usual care patients received video visits with primary care and stroke. TASC included a tablet and monitor to wirelessly transmit BP data to the electronic health record, with telenursing support, tailored infographics to explain BP readings, and pharmacist visits. Outcomes assessment was blinded. Feasibility outcomes included recruitment, randomization, adherence, and retention. Systolic BP from baseline to 3 months after discharge was evaluated using generalized linear modeling. Results: Fifty patients (64±14 years; 36% women‚ 44% Hispanic, 32% Black, 54% ≤high school education, 30% private insurance), and 75% of all eligible were enrolled over 6.3 months. Baseline systolic BP was similar in both (TASC n=25, 140±19 mm Hg; usual care n=25, 142±19 mm Hg). At 3 months, adherence to video visits (91% versus 75%, P =0.14) and retention (84% versus 64%, P =0.11) were higher with TASC. Home systolic BP declined by 16±19 mm Hg from baseline in TASC and increased by 3±24 mm Hg in usual care ( P =0.01). Among Black patients, systolic BP control (<130 mm Hg) improved from 40% to 100% with TASC versus 14% to 29%, and among Hispanic patients, from 23% to 62% with TASC, versus 33% to 17% in usual care. Conclusions: Enhancing post-acute stroke care with home BP telemonitoring is feasible to improve hypertension in an underserved setting and should be tested in a definitive randomized clinical trial. Registration: URL: https://www.clinicaltrials.gov ; Unique identifier: NCT04640519.
Background There is potential to increase the speed of scientific discovery and implement personalized health care by using digitized clinical data collected on the patient care experience. The use of these data in research raises concerns about the privacy and confidentiality of personal health information. This study explored community members’ views on the secondary use of digitized clinical data to (1) recruit participants for clinical studies; (2) recruit family members of persons with an index condition for primary studies; and (3) conduct studies of information related to stored biospecimens. Methods A qualitative descriptive design was used to examine the bioethical issues outlined from the perspective of urban-dwelling community members. Focus groups were used for data collection, and emergent content analysis was employed to organize and interpret the data. Results Thirty community members attended one of four focus groups ranging in size from 4 to 11 participants. Five critical themes emerged from the focus-group material: (1) perceived motivators for research participation; (2) objective or “real-life” barriers to research participation; (3) a psychological component of uncertainty and mistrust; (4) preferred mechanisms for recruitment and participation; and (5) cultural characteristics that can impact understanding and willingness to engage in research. Conclusions The overriding concern of community members regarding research participation and/or secondary clinical and nonclinical use of digitized information was that their involvement would be safe and the outcome would be meaningful to them and to others. According to participants, biospecimens acquired during routine clinical visits or for research are no longer possessions of the participant. Although the loss of privacy was a concern for participants, they preferred that researchers access their personal health information using a digitized clinical file rather than through a paper-based medical record.
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