Background Patients at risk for sudden cardiac death or having suffered cardiac arrest may receive an implantable cardioverter defibrillator (ICD). This device provides monitoring and therapy for life-threatening heart rhythms. Remote monitoring of ICDs has decreased the time between abnormal heart rhythm events and clinic follow-up. Currently, the data transmitted from the device are reviewed and stored by the clinic, but patients do not have access to the data. While connecting patients directly with their ICD data has potential to enhance engagement in their care and improve health outcomes, patient attitudes and perceptions about receiving ICD data have not been explored. Objective This research is the first demonstration of delivering ICD data to patients through a personal health record (PHR) using a novel technical framework. The objective of this study was to use a PHR interface as a technology probe to explore patients' experiences with directly receiving their ICD data from remote monitoring. Methods We enrolled 21 patients with an ICD undergoing remote monitoring at a large outpatient cardiology clinic in Indiana, United States. Participants received their ICD data from remote monitoring through a PHR over 3 months. In-depth, semistructured interviews were conducted at 3 months and analyzed using thematic analysis. Results Participants were 36 to 86 years old, mean age (SD) of 67 (14) years, predominately male (76%), and white (95%). Key themes were ICD questions and concerns, experiences with remote monitoring, PHR use, and feedback about the ICD data summary. The findings showed that overall, patients desired information that provides reassurance, is easy to understand, and is presented in a meaningful way. Conclusion Sharing ICD data from remote monitoring requires adequate context and scaffolding to support patient understanding. Engaging patients with information that is useful and valuable to them through a PHR may require appropriate and individualized tailoring of information.

BackgroundObesity prevalence is higher among African American adolescent (AAA) girls than among non-black girls. Lower levels of physical activity (PA) likely contribute to this disparity; this may be impacted by hairstyle concerns.MethodsIn 2011, focus groups were conducted with AAA girls 14-17 years old (n = 36) in Michigan (n = 9), California (n = 11), and Georgia (n = 16). Groups addressed perceptions of hairstyles, exercise, and relationships between the two. Groups were recorded, transcripts reviewed, and themes identified. Adolescents completed a standardized ethnic identity (EI) measure and a survey addressing demographics and PA. Linear regression was used to examine associations between self-reported activity and participants’ characteristics.ResultsFour themes emerged: 1) between ages 8 and 15, when concerns about hairstyles began, participants changed from “juvenile” (natural) styles to “adult” (straightened) styles; 2) participants avoided getting wet or sweating during exercise because their straightened hair became “nappy;” 3) braids with extensions and natural styles were viewed as better for exercise but not very attractive; 4) participants almost universally selected long, straight hairstyles as most attractive. In Michigan and California, EI was positively associated with levels of PA (p < 0.05) and overall having extensions was also positively associated with levels of PA.ConclusionsA preference for straight hair may contribute to AAA girls avoiding certain activities due to concerns about sweat affecting their hair. Furthermore, EI and hairstyle choice appear to be associated with levels of PA for some participants. Efforts to increase AAA girls’ PA may benefit from approaches that address hairstyle choices and EI.

ABSTRACT. Embolic stroke is a major complication of atrial fibrillation (AF) that frequently results in disability or death. The administration of oral anticoagulation can reduce stroke risk in AF patients; however, medication non-adherence can eliminate this benefit. To date, reported patient adherence rates to oral anticoagulation regimens vary. The objective of the current study was to examine the impact of medication-specific education delivered via a personal health record (PHR) system on medication adherence. A randomized, prospective study was conducted from February 2014 to June 2014 at Parkview Health, a not-for-profit, community-based health care clinic that serves a northeastern Indiana population of more than 820,000. AF patients receiving dabigatran (Pradaxa s ; Boehringer Ingelheim GmbH, Ingelheim am Rhein, Germany) to prevent stroke participated in this study. The study participants were predominantly Caucasian males over 65 years of age who were educated, insured, and living above the poverty level. Patients were allowed to view online, download, and transmit health information via a PHR. The intervention group received PHR training and dabigatran education via the PHR. The control group received standard care and PHR access without training. A longitudinal survey pertaining to medication knowledge, medication adherence, and patient engagement was administered at baseline and at the end of the study. Medication-dispensing data collected from pharmacy refill prescriptions were used for calculating the medication possession ratio (MPR). Ninety patients were included in this study, and were randomly assigned to either the intervention group (n ¼ 46) or the control group (n ¼ 44). All participants completed the baseline survey, and 95.6% of patients finished the follow-up survey. The mean score for knowledge increased significantly in the intervention group (from 3.77 to 4.23, p ¼ 0.005), but not in the control group (from 3.70 to 3.95, p ¼ 0.72). The MPR was significantly higher in the intervention group (97.47% vs. 87.67%, p ¼ 0.001). Both groups had similar levels of improvement in Patient Activation Measure scores (from 63.0 to 65.8, p ¼ 0.078 vs. from 63.1 to 63.6, p ¼ 0.814). Patients who used the PHR achieved greater medication knowledge, resulting in improved medication adherence. To our knowledge, no published randomized trial has reported on the use of PHRs to improve medication adherence and knowledge. This study is the first to demonstrate a positive impact on anticoagulation adherence with PHR use.

This study suggests that participants perceive potential benefits from incorporating social media interventions into pediatric weight management efforts. Privacy and security issues do not appear to be major parental concerns. Future work should explore the impact of program-specific social media interventions on outcomes for patients in weight management programs.

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