Community Based Participatory Research: The Application and Lessons Learned from a Study with LGB College Students

Lesbian, gay, and bisexual (LGB) individuals are members of a vulnerable group where health disparities have been identified. To gain a better understanding of the LGB college student healthcare experience and its contribution to the healthcare disparities found in LGB population, a community based participatory research (CBPR) approach was used to fill the gap. This paper will outline the CBPR process with an emphasis on how the principle investigator applied the tenets of CBPR when working with a local LGB college community. Several lessons learned from the research process are also shared in this paper

Building Health Equity One Institution at a Time: The Research Infrastructure in Minority Institutions Project

Developing a well-trained workforce interested in, and prepared for, conducting health equity research is an important national priority. Scientists from Minority-Serving Institutions (MSIs) bring unique perspectives and experiences with racial, ethnic and social inequities in health and health status but often lack access to training and mentoring opportunities, which is crucial for increasing the diverse pool of investigators who are adequately prepared to conduct health disparities research and to compete for National Institutes of Health research funding. The focus of the California State University, Long Beach (CSULB) Research Infrastructure in Minority Institutions (RIMI) Project was to: (a) enhance CSULB’s infrastructure and research capacity, (b) conduct applied community health research on health conditions disproportionately affecting disadvantaged populations, and (c) support faculty to embark on careers in reducing health disparities. Faculty received training, mentorship, and release time support to participate in research-related activities. Select faculty also received funding to conduct a two-year health disparities research project. Within a relatively short period of time, the RIMI Project made important strides toward strengthening the research infrastructure at CSULB by enhancing faculty capacity, improving research utilization to address health disparities, and strengthening campus and community collaborations. MSIs are encouraged to apply for opportunities to build their institution’s research capacity. The lessons learned from this project may be used as a guide for other teaching institutions that have the goal to develop minority faculty researchers

Rhode Island’s Health Equity Zones: Addressing Local Problems with Local Solutions

The Rhode Island Department of Health (RIDOH) describes the strategies and infrastructure it has developed to fund its placed-based initiatives to address the social determinants of health to eliminate health disparities. Using a data driven and community-led approach, RIDOH funded 10 local collaboratives, each with its own, geographically-defined “Health Equity Zone,” or “HEZ,” and, to support the collaboratives, created a new “Health Equity Institute,” a “HEZ Team” of 9 seasoned project managers, and direct lines of communications between these assets and the Office of the Director of Health

The National Dialogue on the Quadrennial Homeland Security Review

Six years after its creation, the Department of Homeland Security (DHS) undertook the first Quadrennial Homeland Security Review (QHSR) to inform the design and implementation of actions to ensure the safety of the United States and its citizens. This review, mandated by the Implementing the 9/11 Commission Recommendations Act of 2007, represents the first comprehensive examination of the homeland security strategy of the nation. The QHSR includes recommendations addressing the long-term strategy and priorities of the nation for homeland security and guidance on the programs, assets, capabilities, budget, policies, and authorities of the department.Rather than set policy internally and implement it in a top-down fashion, DHS undertook the QHSR in a new and innovative way by engaging tens of thousands of stakeholders and soliciting their ideas and comments at the outset of the process. Through a series of three-week-long, web-based discussions, stakeholders reviewed materials developed by DHS study groups, submitted and discussed their own ideas and priorities, and rated or "tagged" others' feedback to surface the most relevant ideas and important themes deserving further consideration.Key FindingsThe recommendations included: (1) DHS should enhance its capacity for coordinating stakeholder engagement and consultation efforts across its component agencies, (2) DHS and other agencies should create special procurement and contracting guidance for acquisitions that involve creating or hosting such web-based engagement platforms as the National Dialogue, and (3) DHS should begin future stakeholder engagements by crafting quantitative metrics or indicators to measure such outcomes as transparency, community-building, and capacity

Engaging youth in post-disaster research: Lessons learned from a creative methods approach

Children and youth often demonstrate resilience and capacity in the face of disasters. Yet, they are typically not given the opportunities to engage in youth-driven research and lack access to official channels through which to contribute their perspectives to policy and practice during the recovery process. To begin to fill this void in research and action, this multi-site research project engaged youth from disaster-affected communities in Canada and the United States. This article presents a flexible youth-centric workshop methodology that uses participatory and arts-based methods to elicit and explore youth’s disaster and recovery experiences. The opportunities and challenges associated with initiating and maintaining partnerships, reciprocity and youth-adult power differentials using arts-based methods, and sustaining engagement in post-disaster settings, are discussed. Ultimately, this work contributes to further understanding of the methods being used to conduct research for, with, and about youth.Keywords: youth, disaster recovery, engagement, resilience, arts-based methods, participatory researc

Improving Community Advisory Board Engagement In Precision Medicine Research To Reduce Health Disparities

Community Advisory Boards (CABs) are used in efforts to reduce health disparities; however, there is little documentation in the literature regarding their use in precision medicine research. In this case study, an academic-CAB partnership developed a questionnaire and patient educational materials for two precision smoking cessation interventions that involved use of genetic information. The community-engaged research (CEnR) literature provided a framework for enhancing benefits to CAB members involved in developing research documents for use with a low-income, ethnically diverse population of smokers. The academic partners integrated three CEnR strategies: 1) in-meeting statements acknowledging their desire to learn from community partners, 2) in-meeting written feedback to and from community partners, and 3) a survey to obtain CAB member feedback post-meetings. Strategies 1 and 2 yielded modifications to pertinent study materials, as well as suggestions for improving meeting operations that were then adopted, as appropriate, by the academic partners. The survey indicated that CAB members valued the meeting procedure changes which appeared to have contributed to improvements in attendance and satisfaction with the meetings. Further operationalization of relevant partnership constructs and development of tools for measuring these aspects of community-academic partnerships is warranted to support community engagement in precision medicine research studies

National Campaign to Reform State Juvenile Justice Systems and the National Communications Effort

Note: This evaluation is accompanied by an evaluation of the Models for Change initiative as well as introduction to the evaluation effort by MacArthur's President, Julia Stasch, and a response to the evaluation from the program team. Access these related materials here.This evaluation's principal focus was to determine if and how the National Communications Effort shaped and elevated a narrative that reached its target audiences and increased their understanding and support for juvenile justice reform. More broadly, the evaluation also examined the ways in which a complementary, experimental communications strategy could help support and sustain a movement of juvenile justice reform. Additionally, the MacArthur Foundation expressed a desire to know whether the National Communications Effort had an impact on policy reform and the broader media landscape, even though these were not objectives or intended outcomes of the National Communications Effort

Building Summit Basecamp: Year 1

This case study shares what's been learned in the first year of Summit Basecamp, an ambitious effort to support public schools across the United States in implementing personalized learning. While recognizing that Summit Basecamp is one approach to personalized learning, we believe the lessons from the 2015-16 school year can inform the work of others in the field.Summit Basecamp is now called the Summit Learning Program. This publication is the fourth case study that FSG has written with Summit Public Schools

Fundamental Researcher Attributes: Reflections on Ways to Facilitate Participation in Community Psychology Doctoral Dissertation Research

As novice researchers, Community Psychology doctoral students encounter fresh challenges when they attempt to facilitate participation by members of the community in their dissertation projects. This article presents the merit in adopting fundamental researcher attributes, which have been described in published academic literature as personal characteristics that facilitate participation by members of the community in research studies. The value of these researcher attributes is exemplified in the discussion of one of the author’s experiences in the early stages of his dissertation research process. This article also presents new researcher attributes for facilitating participation by community members that the author recognised after critical reflection on his experiences during the same research process. Cultural humility, shared vulnerability, reflexivity, methodological flexibility, academic assiduity and creative resourcefulness are researcher attributes doctoral students should consider adopting and developing if they intend to facilitate participation by members of the community in their dissertation projects

Novel methods to estimate antiretroviral adherence: protocol for a longitudinal study.

BackgroundThere is currently no gold standard for assessing antiretroviral (ARV) adherence, so researchers often resort to the most feasible and cost-effective methods possible (eg, self-report), which may be biased or inaccurate. The goal of our study was to evaluate the feasibility and acceptability of innovative and remote methods to estimate ARV adherence, which can potentially be conducted with less time and financial resources in a wide range of clinic and research settings. Here, we describe the research protocol for studying these novel methods and some lessons learned.MethodsThe 6-month pilot study aimed to examine the feasibility and acceptability of a remotely conducted study to evaluate the correlation between: 1) text-messaged photographs of pharmacy refill dates for refill-based adherence; 2) text-messaged photographs of pills for pill count-based adherence; and 3) home-collected hair sample measures of ARV concentration for pharmacologic-based adherence. Participants were sent monthly automated text messages to collect refill dates and pill counts that were taken and sent via mobile telephone photographs, and hair collection kits every 2 months by mail. At the study end, feasibility was calculated by specific metrics, such as the receipt of hair samples and responses to text messages. Participants completed a quantitative survey and qualitative exit interviews to examine the acceptability of these adherence evaluation methods. The relationship between the 3 novel metrics of adherence and self-reported adherence will be assessed.DiscussionInvestigators conducting adherence research are often limited to using either self-reported adherence, which is subjective, biased, and often overestimated, or other more complex methods. Here, we describe the protocol for evaluating the feasibility and acceptability of 3 novel and remote methods of estimating adherence, with the aim of evaluating the relationships between them. Additionally, we note the lessons learned from the protocol implementation to date. We expect that these novel measures will be feasible and acceptable. The implications of this research will be the identification and evaluation of innovative and accurate metrics of ARV adherence for future implementation