Does an interactive trust-enhanced electronic consent improve patient experiences when asked to share their health records for research? A randomized trial

Objective In the context of patient broad consent for future research uses of their identifiable health record data, we compare the effectiveness of interactive trust-enhanced e-consent, interactive-only e-consent, and standard e-consent (no interactivity, no trust enhancement). Materials and Methods A randomized trial was conducted involving adult participants making a scheduled primary care visit. Participants were randomized into 1 of the 3 e-consent conditions. Primary outcomes were patient-reported satisfaction with and subjective understanding of the e-consent. Secondary outcomes were objective knowledge, perceived voluntariness, trust in medical researchers, consent decision, and time spent using the application. Outcomes were assessed immediately after use of the e-consent and at 1-week follow-up. Results Across all conditions, participants (N = 734) reported moderate-to-high satisfaction with consent (mean 4.3 of 5) and subjective understanding (79.1 of 100). Over 94% agreed to share their health record data. No statistically significant differences in outcomes were observed between conditions. Irrespective of condition, black participants and those with lower education reported lower satisfaction, subjective understanding, knowledge, perceived voluntariness, and trust in medical researchers, as well as spent more time consenting. Conclusions A large majority of patients were willing to share their identifiable health records for research, and they reported positive consent experiences. However, incorporating optional additional information and messages designed to enhance trust in the research process did not improve consent experiences. To improve poorer consent experiences of racial and ethnic minority participants and those with lower education, other novel consent technologies and processes may be valuable

Attitudes toward Management of Sickle Cell Disease and Its Complications: A National Survey of Academic Family Physicians

Objective. Sickle cell disease (SCD) is a disease that requires a significant degree of medical intervention, and family physicians are one potential provider of care for patients who do not have access to specialists. The extent to which family physicians are comfortable with the treatment of and concerned about potential complications of SCD among their patients is unclear. Our purpose was to examine family physician's attitudes toward SCD management. Methods. Data was collected as part of the Council of Academic Family Medicine Educational Research Alliance (CERA) survey in the United States and Canada that targeted family physicians who were members of CERA-affiliated organizations. We examined attitudes regarding management of SCD. Results. Overall, 20.4% of respondents felt comfortable with treatment of SCD. There were significant differences in comfort level for treatment of SCD patients depending on whether or not physicians had patients who had SCD, as well as physicians who had more than 10% African American patients. Physicians also felt that clinical decision support (CDS) tools would be useful for treatment (69.4%) and avoiding complications (72.6%) in managing SCD patients. Conclusions. Family physicians are generally uncomfortable with managing SCD patients and recognize the utility of CDS tools in managing patients

Exploring willingness of elder Chinese in Houston to participate in clinical research

Background and objectives: Inadequate minority participation in clinical research can threaten the applicability and strength of scientific findings. Previous research suggests that trial participation rates are lowest among Asian Americans, compared to other groups. This study explored barriers to clinical research participation among elder Chinese living in Houston, Texas. Additionally we administered the Trust in Medical Researchers Scale (TIMRS), used previously in researching trust in medical researchers as related to research participation. Design: In this mixed methods study, a semi-structured interview, including the TIMRS were administered to 30 adults of Chinese ancestry aged 50 years or older recruited from a Chinese community center. Interviews were conducted in English, Mandarin and Cantonese and independently coded and analyzed using thematic content analysis. TIMRS scores were calculated for participants. Results: Participants were 70% female, 70% were 60 or elder, all were foreign born and on average lived in the US for 21.8 years. Participants perceived risks to research participation and preferred language concordant research staff. Interviewees were more willing to participate if they perceived personal and community health-related benefits. The overall TIMRS score was 23.9 (±5.0), lower than the overall TIMRS for Whites in a previous study (P < 0.001). Conclusions: The barriers and facilitators to research participation confirmed previous research among Asians. Our participant TIMRS scores were consistent with decreased levels of trust observed in the original TIMRS study for African Americans as compared and lower than Whites. Employing strategies that utilize language concordant staff who build trust with participants may aid in recruiting elder Chinese, especially if the research is personally relevant to those being recruited

Data from: Population characteristics, mechanisms of primary care and premature mortality in England: a cross-sectional study

Objectives. Health systems with strong primary care tend to have better population outcomes, but in many countries demand for care is growing. We sought to identify mechanisms of primary care that influence premature mortality. Design. We developed a conceptual model of the mechanisms by which primary care influences premature mortality, and undertook a cross-sectional study in which population and primary care variables reflecting the model were used to explain variations in mortality under aged 75 years. The premature standardised mortality ratios (SMRs) for each practice, available from the Department of Health, had been calculated from numbers of deaths in the five years 2006-10. A regression model was undertaken with explanatory variables for the year 2009/10, and repeated to check stability using data for 2008/09 and 2010/11. Setting: All general practices in England were eligible for inclusion, and of the total of 8290, complete data were available for 7858. Results. Population variables, particularly deprivation, were the most powerful predictors of premature mortality, but the mechanisms of primary care depicted in our model also affected mortality. The number of GPs/1000 population and detection of hypertension were negatively associated with mortality. In less deprived practices, continuity of care was also negatively associated with mortality. Conclusions. Greater supply of primary care is associated with lower premature mortality even in a health system that has strong primary care (England). Health systems need to sustain the capacity of primary care to deliver effective care, and should assist primary care providers in identifying and meeting the needs of socio-economically deprived groups

E U R O P E A N SO CIETY O F CARDIOLOGY ® Original scientific paper Chlamydia pneumoniae and progression of subclinical atherosclerosis

Abstract Background: Cross-sectional investigation between presence of antibodies and coronary artery calcification (CAC) in past studies has shown no relationship, but progression over time has not been investigated. The objective of this study was to determine the relationship between presence of Chlamydia pneumoniae antibodies and progression of CAC and ankle-brachial index (ABI). Design: The Multiethnic Study of Atherosclerosis (MESA) is a prospective population-based cohort of racially and ethnically diverse male and female participants recruited from six communities in the USA, age 45-84 years, free of clinical cardiovascular disease at baseline. Methods: The main outcomes were progression of mean CAC and ABI between exams 1 (2000-02) and 3 (2004-05) (median follow-up of 3.13 years) by C. pneumoniae antibody. Multivariate models adjusting for demographics, obesity, smoking, alcohol use, and physical activity were computed. Results: Of 2223 subjects analysed, 76% were positive for C. pneumoniae antibodies. Progression of CAC was significantly higher in the antibody-positive group (93.8 vs. 78.2 agatston units, p ¼ 0.02) and in antibody-positive subjects with CAC !10 at baseline (216.5 vs. 178.6, p ¼ 0.02) than antibody-negative group. Smoking and body mass index !30 kg/m 2 both had interactions with presence of C. pneumoniae yielding significantly greater CAC progression. Progression of ABI did not significantly differ by C. pneumoniae antibody status in models adjusted for covariates. Conclusions: C. pneumoniae antibodies are related to progression of CAC, particularly in individuals with CAC present at baseline. This provides evidence that certain groups are at higher risk of atherosclerotic progression and may be useful for risk stratification and treatment

Patient preferences toward an interactive e-consent application for research using electronic health records

Objective: The purpose of this study was to assess patient perceptions of using an interactive electronic consent (e-consent) application when deciding whether or not to grant broad consent for research use of their identifiable electronic health record (EHR) information. Materials and Methods: For this qualitative study, we conducted a series of 42 think-aloud interviews with 32 adults. Interview transcripts were coded and analyzed using a modified grounded theory approach. Results: We identified themes related to patient preferences, reservations, and mixed attitudes toward consenting electronically; low- and high-information-seeking behavior; and an emphasis on reassuring information, such as data protections and prohibitions against sharing data with pharmaceutical companies. Participants expressed interest in the types of information contained in their EHRs, safeguards protecting EHR data, and specifics on studies that might use their EHR data. Discussion: This study supports the potential value of interactive e-consent applications that allow patients to customize their consent experience. This study also highlights that some people have concerns about e-consent platforms and desire more detailed information about administrative processes and safeguards that protect EHR data used in research. Conclusion: This study contributes new insights on how e-consent applications could be designed to ensure that patients' information needs are met when seeking consent for research use of health record information. Also, this study offers a potential electronic approach to meeting the new Common Rule requirement that consent documents contain a "concise and focused" presentation of key information followed by more details

Trends in age and sex-specific hospital admission rates per million children among children and young people ages 5 to 19 years, for obesity and where obesity was a comorbidity, 2000–2009.

<p>Trends in age and sex-specific hospital admission rates per million children among children and young people ages 5 to 19 years, for obesity and where obesity was a comorbidity, 2000–2009.</p

Demographic characteristics of children and young people admitted with obesity-related diagnosis over the entire study period, by primary or secondary diagnosis, 2000 to 2009.

<p>Demographic characteristics of children and young people admitted with obesity-related diagnosis over the entire study period, by primary or secondary diagnosis, 2000 to 2009.</p

Age- and sex-specific hospital admission rates per million children for obesity as a primary diagnosis and where obesity was a comorbidity, 2000–2009.

<p>Age- and sex-specific hospital admission rates per million children for obesity as a primary diagnosis and where obesity was a comorbidity, 2000–2009.</p