Using a deliberative forum for engaging health system and health plan leaders to prioritize research topics.

Background: Including stakeholders in the process and outcomes of comparative effectiveness research (CER) can help ensure that research questions are relevant and findings are communicated to individuals who need them for decision-making. Yet limited strategies are available to assist researchers with stakeholder engagement. While health system leaders’ perspectives are increasingly recognized as valuable for CER planning, their inclusion in the stakeholder pool raises challenges due to differences in culture, training, incentives, priorities, and language norms. Objective: To convene and evaluate a deliberative forum for engaging health system leaders and other stakeholders in order to shape health system research priorities for the PaTH Clinical Data Research Network. Design: Break-out sessions and large-group deliberation solicited diverse perspectives and explored benefits and challenges of different research questions. Topic reframing, narrative integration and dynamic updating techniques facilitated communication across diverse backgrounds. Participants: 29 health system and health plan leaders, clinicians, clinical researchers and patients from the network’s six participating health systems. Main Measures: Audience response system (ARS) polling on general topic preferences; survey data on measures of engagement and deliberation success. Key Results: A slate of ten specific research topics was vetted; after deliberation, the group converged to favor the characterization of high-utilizers of health care. Audience response polling revealed opinion shifts. Participants reported high levels of satisfaction with the experience and rated it highly for markers of deliberative quality (e.g., opportunity for active participation and adequate discussion, respect for others’ opinions and awareness of different perspectives). Fifty four percent noted their views on the issues changed. Most participants learned from the experience (93%) and agreed that the process helped them to empathize with the challenges of others (85%). Conclusions: A deliberation forum can incorporate diverse stakeholders into CER, enabling participants to inform and learn from each other’s perspectives while shaping the research trajectory

The Development of a Patient and Caregiver Narrative Archive to Support Patient-centered Research

Background: Engaging patients and other stakeholders is a key tenet of patient-centered research, but can be challenging to implement. Objectives: To determine the feasibility of using patient narratives for informing comparative effectiveness research and engaging patients in the research process. Research Design: Cross-sectional study. Participants: The first 153 participants to share a story using the MyPaTH Story Booth protocol were, on average, aged 51 (18.8). Most were white (79%) or African American (13%) and well-educated. Measures: Participants self-categorized their narratives according to the sort of health experience(s) described (e.g., diagnosis, doctor/patient communication), the anatomic locations of health problems discussed and the type of disorder or condition addressed. They also reported on whether they were interested in engaging in clinical research as a participant or stakeholder and their satisfaction with the study processes. Results: The archived narratives addressed a wide range of health experiences of relevance to clinical researchers, most often medical treatment (82%), communication with healthcare team members (81%), diagnosis (64%), symptoms (61%), healthcare access (60%) and health decision-making (60%). Health problems related to diverse anatomic locations were addressed. Health conditions such as mental health concerns (35%), infections (23%) and cancers (20%) were often discussed. Among participants, 63% expressed interest in learning of opportunities for stakeholder engagement in research related to their stories. Ninety seven percent were very satisfied or satisfied with the MyPaTH Story Booth process. Conclusions: The narrative archive represents a unique resource for researchers interested in developing and carrying out patient-centered research projects to improve health or healthcare

Electronic Health Record-Based Recruitment and Retention and Mobile Health App Usage: Multisite Cohort Study.

BACKGROUND: To address the obesity epidemic, there is a need for novel paradigms, including those that address the timing of eating and sleep in relation to circadian rhythms. Electronic health records (EHRs) are an efficient way to identify potentially eligible participants for health research studies. Mobile health (mHealth) apps offer available and convenient data collection of health behaviors, such as timing of eating and sleep. OBJECTIVE: The aim of this descriptive analysis was to report on recruitment, retention, and app use from a 6-month cohort study using a mobile app called Daily24. METHODS: Using an EHR query, adult patients from three health care systems in the PaTH clinical research network were identified as potentially eligible, invited electronically to participate, and instructed to download and use the Daily24 mobile app, which focuses on eating and sleep timing. Online surveys were completed at baseline and 4 months. We described app use and identified predictors of app use, defined as 1 or more days of use, versus nonuse and usage categories (ie, immediate, consistent, and sustained) using multivariate regression analyses. RESULTS: Of 70,661 patients who were sent research invitations, 1021 (1.44%) completed electronic consent forms and online baseline surveys; 4 withdrew, leaving a total of 1017 participants in the analytic sample. A total of 53.79% (n=547) of the participants were app users and, of those, 75.3% (n=412), 50.1% (n=274), and 25.4% (n=139) were immediate, consistent, and sustained users, respectively. Median app use was 28 (IQR 7-75) days over 6 months. Younger age, White race, higher educational level, higher income, having no children younger than 18 years, and having used 1 to 5 health apps significantly predicted app use (vs nonuse) in adjusted models. Older age and lower BMI predicted early, consistent, and sustained use. About half (532/1017, 52.31%) of the participants completed the 4-month online surveys. A total of 33.5% (183/547), 29.3% (157/536), and 27.1% (143/527) of app users were still using the app for at least 2 days per month during months 4, 5, and 6 of the study, respectively. CONCLUSIONS: EHR recruitment offers an efficient (ie, high reach, low touch, and minimal participant burden) approach to recruiting participants from health care settings into mHealth research. Efforts to recruit and retain less engaged subgroups are needed to collect more generalizable data. Additionally, future app iterations should include more evidence-based features to increase participant use

Association of Eating and Sleeping Intervals With Weight Change Over Time: The Daily24 Cohort.

Background We aim to evaluate the association between meal intervals and weight trajectory among adults from a clinical cohort. Methods and Results This is a multisite prospective cohort study of adults recruited from 3 health systems. Over the 6-month study period, 547 participants downloaded and used a mobile application to record the timing of meals and sleep for at least 1 day. We obtained information on weight and comorbidities at each outpatient visit from electronic health records for up to 10  years before until 10 months after baseline. We used mixed linear regression to model weight trajectories. Mean age was 51.1 (SD 15.0) years, and body mass index was 30.8 (SD 7.8) kg/

Working to Increase Stability through Exercise (WISE): screening, recruitment, and baseline characteristics

Background The aim of this paper is to describe the utility of various recruitment modalities utilized in the Working to Increase Stability through Exercise (WISE) study. WISE is a pragmatic randomized trial that is testing the impact of a 3-year, multicomponent (strength, balance, aerobic) physical activity program led by trained volunteers or delivered via DVD on the rate of serious fall-related injuries among adults 65 and older with a past history of fragility fractures (e.g., vertebral, fall-related). The modified goal was to recruit 1130 participants over 2 years in three regions of Pennsylvania. Methods The at-risk population was identified primarily using letters mailed to patients of three health systems and those over 65 in each region, as well as using provider alerts in the health record, proactive recruitment phone calls, radio advertisements, and presentations at community meetings. Results Over 24 months of recruitment, 209,301 recruitment letters were mailed, resulting in 6818 telephone interviews. The two most productive recruitment methods were letters (72% of randomized participants) and the research registries at the University of Pittsburgh (11%). An average of 211 letters were required to be mailed for each participant enrolled. Of those interviewed, 2854 were ineligible, 2,825 declined to enroll and 1139 were enrolled and randomized. Most participants were female (84.4%), under age 75 (64.2%), and 50% took an osteoporosis medication. Not having a prior fragility fracture was the most common reason for not being eligible (87.5%). The most common reason provided for declining enrollment was not feeling healthy enough to participate (12.6%). Conclusions The WISE study achieved its overall recruitment goal. Bulk mailing was the most productive method for recruiting community-dwelling older adults at risk of serious fall-related injury into this long-term physical activity intervention trial, and electronic registries are important sources and should be considered

2012 ACCF/AHA/ACP/AATS/PCNA/SCAI/STS guideline for the diagnosis and management of patients with stable ischemic heart disease

The recommendations listed in this document are, whenever possible, evidence based. An extensive evidence review was conducted as the document was compiled through December 2008. Repeated literature searches were performed by the guideline development staff and writing committee members as new issues were considered. New clinical trials published in peer-reviewed journals and articles through December 2011 were also reviewed and incorporated when relevant. Furthermore, because of the extended development time period for this guideline, peer review comments indicated that the sections focused on imaging technologies required additional updating, which occurred during 2011. Therefore, the evidence review for the imaging sections includes published literature through December 2011