Community-Based Review of Research Across Diverse Community Contexts: Key Characteristics,Critical Issues,and Future Directions

A growing number of community-based organizations and community–academic partnerships are implementing processes to determine whether and how health research is conducted in their communities. These community-based research review processes (CRPs) can provide individual and community-level ethics protections, enhance the cultural relevance of study designs and competence of researchers, build community and academic research capacity, and shape research agendas that benefit diverse communities.To better understand how they are organized and function, representatives of 9 CRPs from across the United States convened in 2012 for a working meeting.In this article, we articulated and analyzed the models presented, offered guidance to communities that seek to establish a CRP, and made recommendations for future research, practice, and policy.A growing number of community-based organizations and community–academic partnerships are implementing processes to determine whether and how health research is conducted in their communities.1–12 These community-based research review processes (CRPs) can provide individual- and community-level ethics protections, enhance the cultural relevance of study designs and competence of researchers, build community and academic research capacity, and help to set research agendas that benefit diverse communities. In 2009, with funding from the Greenwall Foundation, Community-Campus Partnerships for Health (CCPH) completed the first national study of CRPs in the United States.2,13The study identified 109 CRPs that mainly function through community–academic partnerships, community-based organizations, community health centers, and tribes, with 30 more in development. These CRPs were primarily formed to ensure that the involved communities are engaged in and directly benefit from research and are protected from its harms. Some are federally recognized institutional review boards (IRBs) that approve, monitor, and review research involving human participants. Others are advisory bodies. They all routinely examine issues that institution-based IRBs typically do not, such as community risks and benefits of the research and cultural appropriateness of the study design.2,13To better understand how CRPs are organized and function, CCPH, The Bronx Health Link, and the Albert Einstein College of Medicine convened representatives of 3 community IRBs, 5 community-based research review committees, and 1 university-based community research review committee in the United States for a working meeting in 2012 (see the box on page 1295). The meeting goals were to celebrate successes, identify promising practices, address challenges, and plan collaborations. The 9 participating CRPs were purposefully invited to reflect diversity in terms of geography, community served, organizational structure, and experience. Meeting proceedings described the CRPs in attendance and highlighted the emerging themes.1 In this article, we articulated and analyzed their diverse models, offered guidance to communities that seek to establish or strengthen a CRP, and outlined an agenda for future research, practice, funding, and policy.

Community-Based Research Review Processes Discussed in This Article

Biology‐Driven Gene‐Gene Interaction Analysis of Age‐Related Cataract in the eMERGE Network

Bioinformatics approaches to examine gene‐gene models provide a means to discover interactions between multiple genes that underlie complex disease. Extensive computational demands and adjusting for multiple testing make uncovering genetic interactions a challenge. Here, we address these issues using our knowledge‐driven filtering method, Biofilter, to identify putative single nucleotide polymorphism (SNP) interaction models for cataract susceptibility, thereby reducing the number of models for analysis. Models were evaluated in 3,377 European Americans (1,185 controls, 2,192 cases) from the Marshfield Clinic, a study site of the Electronic Medical Records and Genomics (eMERGE) Network, using logistic regression. All statistically significant models from the Marshfield Clinic were then evaluated in an independent dataset of 4,311 individuals (742 controls, 3,569 cases), using independent samples from additional study sites in the eMERGE Network: Mayo Clinic, Group Health/University of Washington, Vanderbilt University Medical Center, and Geisinger Health System. Eighty‐three SNP‐SNP models replicated in the independent dataset at likelihood ratio test P < 0.05. Among the most significant replicating models was rs12597188 (intron of CDH1)–rs11564445 (intron of CTNNB1). These genes are known to be involved in processes that include: cell‐to‐cell adhesion signaling, cell‐cell junction organization, and cell‐cell communication. Further Biofilter analysis of all replicating models revealed a number of common functions among the genes harboring the 83 replicating SNP‐SNP models, which included signal transduction and PI3K‐Akt signaling pathway. These findings demonstrate the utility of Biofilter as a biology‐driven method, applicable for any genome‐wide association study dataset.     

An In‐House Prevocational Training Program for Newly Discharged Psychiatric Inpatients: Exploring Its Employment Outcomes and the Predictive Factors

Individuals with severe mental disorders continue to experience low employment rates. Occupational therapists play an important role in helping these individuals develop the skills and obtain the supports necessary for productive living. This retrospective cohort study aimed to explore employment outcomes and identify factors predictive of the outcomes of an in‐house prevocational training program designed for newly discharged psychiatric inpatients. Data retrieved from the files of 58 participants including demographics, diagnostic history, physical fitness, functional assessment results, the use of vocational counselling service and employment status were analyzed. The overall employment rates among the participants were high (67.2–79.3%) within the 6 months following the prevocational training program. No significant differences were found in the employment rates across the 1, 3 and 6‐month time periods post‐training. Vocational counselling service post‐training and hand function were two factors predictive of participants' employment outcomes. Occupational therapists should attend to the clients' need for continuous vocational support and carefully identify the personal, functional and environmental factors contributing to successful employment. Caution in interpreting the results is warranted because of the lack of control and randomization in this retrospective study. Additional longitudinal cohort or experimental studies would add further certainty to the current findings. Copyright © 2015 John Wiley & Sons, Ltd.     

The Return of Actionable Variants Empirical (RAVE) Study,a Mayo Clinic Genomic Medicine Implementation Study: Design and Initial Results

Objectives

To identify clinically actionable genetic variants from targeted sequencing of 68 disease-related genes, estimate their penetrance, and assess the impact of disclosing results to participants and providers.

Anesthesia for subcutaneous implantable cardioverter‐defibrillator implantation: Perspectives from the clinical experience of a U.S. panel of physicians

1 Background and objective

Worldwide adoption of the subcutaneous implantable cardioverter‐defibrillator (S‐ICD) for preventing sudden cardiac death continues to increase, as longer‐term evidence demonstrating the safety and efficacy of the S‐ICD expands. As a relatively new technology, comprehensive anesthesia guidance for the management of patients undergoing S‐ICD placement is lacking. This article presents advantages and disadvantages of different periprocedural sedation and anesthesia options for S‐ICD implants including general anesthesia, monitored anesthesia care, regional anesthesia, and nonanesthesia personnel administered sedation and analgesia.

2 Methods

Guidance, for approaches to anesthesia care during S‐ICD implantation, is presented based upon literature review and consensus of a panel of high‐volume S‐ICD implanters, a regional anesthesiologist, and a cardiothoracic anesthesiologist with significant S‐ICD experience. The panel developed suggested actions for perioperative sedation, anesthesia, surgical practices, and a decision algorithm for S‐ICD implantation.

3 Conclusions

While S‐ICD implantation currently requires higher sedation than transvenous ICD systems, the panel consensus is that general anesthesia is not required or is obligatory for the majority of patients for the experienced S‐ICD implanter. The focus of the implanting physician and the anesthesia services should be to maximize patient comfort and take into consideration patient‐specific comorbidities, with a low threshold to consult the anesthesiology team.