Factors influencing antimicrobial resistance in the European food system and potential leverage points for intervention: A participatory, One Health study.

INTRODUCTION: Antimicrobial resistance (AMR) is a global crisis that evolves from a complex system of factors. Understanding what factors interact is key to finding solutions. Our objective was to identify the factors influencing AMR in the European food system and places to intervene. MATERIALS AND METHODS: We conducted two workshops involving participants with diverse perspectives to identify the factors influencing AMR and leverage points (places) to target interventions. Transcripts were open coded for factors and connections, then transcribed into Vensim 8.0.4 to develop a causal loop diagram (CLD) and compute the number of feedback loops. Thematic analysis followed to describe AMR dynamics in Europe's food system and places for intervention. The CLD and themes were confirmed via participant feedback. RESULTS: Seventeen participants representing human, animal and agricultural sectors identified 91 CLD factors and 331 connections. Seven themes (e.g., social and economic conditions) describing AMR dynamics in Europe's food system, five 'overarching factors' that impact the entire CLD system (e.g., leadership) and fourteen places for intervention (e.g., consumer demand) emerged from workshop discussions. Most leverage points fell on highly networked feedback loops suggesting that intervening at these places may create unpredictable consequences. CONCLUSIONS: Our study produced a CLD of factors influencing AMR in Europe's food system that implicates sectors across the One Health spectrum. The high connectivity between the CLD factors described by participants and our finding that factors are connected with many feedback mechanisms underscores the complexity of the AMR problem and the challenge with finding long-term solutions. Identifying factors and feedbacks helped identify relevant leverage points in the system. Some actions, such as government's setting AMU standards may be easier to implement. These actions in turn can support multi-pronged actions that can help redefine the vision, values and goals of the system to sustainably tackle AMR.

A marathon, not a sprint - neuroimaging, Open Science and ethics.

Open Science is calling for a radical re-thinking of existing scientific practices. Within the neuroimaging community, Open Science practices are taking the form of open data repositories and open lab notebooks. The broad sharing of data that accompanies Open Science, however, raises some difficult ethical and legal issues. With neuroethics as a focusing lens, we explore eight central concerns posed by open data with regard to human brain imaging studies: respect for individuals and communities, concern for marginalized communities, consent, privacy protections, participatory research designs, contextual integrity, fusions of clinical and research goals, and incidental findings. Each consideration assists in bringing nuance to the potential benefits for open data sharing against associated challenges. We combine current understandings with forward-looking solutions to key issues. We conclude by underscoring the need for new policy tools to enhance the potential for responsible open data.

A scoping review of PhotoVoice for people with post-stroke aphasia.

BACKGROUND: PhotoVoice is a qualitative research methodology designed to engage and empower marginalized members of a community and/or to understand community needs. PhotoVoice seems aphasia-friendly because it relies on personal photographs to convey opinions regarding prespecified topics. However, PhotoVoice is based on a procedure referred to as the SHOWeD method. Participants are asked to reflect upon their photos by discussing (1) what they See, (2) what is Happening, (3) the relation to Our life, (3) Why the issue or condition exists, and then to (4) explain what can be Done to address the issue(s) at hand. Due to the linguistic demand required to convey complex thoughts and ideas inherent in this methodology, adaptations are likely required to successfully implement with people who have aphasia. AIMS: A scoping review was conducted to summarize the current literature regarding the use of PhotoVoice with people who have aphasia, to address two questions:(1) Are people with post-stroke aphasia included in PhotoVoice studies?(2) What, if any, modifications are required to address post-stroke aphasia and motor impairments? MAIN CONTRIBUTION: This scoping review revealed that researchers often exclude people with aphasia from post-stroke PhotoVoice research. Three studies outlined adaptations that allowed successful implementation with people who have post-stroke aphasia. CONCLUSIONS: Further inquiry regarding how best to adapt PhotoVoice for people with aphasia will facilitate their ability to be included in community-based research. This is an important step in ensuring that all post-stroke stakeholders are involved in projects related to social justice and policy for stroke survivors.

'Sex Is Not Just about Ovaries.' Youth Participatory Research on Sexuality Education in The Netherlands.

Young people are not satisfied with the sexuality education they receive in Dutch high schools. They rate their sexuality education as mediocre (5.8 on a scale of one to ten). In cooperation with 17 young peer researchers, we explored what good sexuality education looks like from the point of view of young people. The peer researchers collected data in their own high school, using mixed methods, starting with individual interviews, followed by focus group discussions and Photovoice sessions to get more in-depth views on topics, class atmosphere, and teacher skills. In total, 300 pupils aged 12-18 participated in the research. Our findings demonstrate that young people want more sexuality education, during their whole school career. They want sexuality education to move beyond biological functions, sexually transmitted diseases, and reproduction into issues like dating, online behavior, sexual pleasure, relationships, and sexual coercion. Moreover, pupils want sexual diversity integrated and normalized in all content. One of the main issues is that sexuality education should be given in a safe class atmosphere, which demands sensitivity from the teacher. In addition to the findings of the study, this article reflects on the steps to be taken to realize the changes desired by young people.

"Can we agree on that"? Plurality, power and language in participatory research.

Participatory epidemiology (PE) is a method that gathers data from groups through focus group interviews and participatory visual and scoring exercises. The method is often used in poor communities in low-income countries where it is hard to obtain conventional epidemiological data. This paper draws on research on the public sphere and democratic deliberation, along with research on language and interpretation, to suggest how PE research could be better equipped to account for diversity in local knowledge, include minority views and acknowledge power dynamics. These aspects are discussed under the three themes of 'plurality', 'power' and 'language'. A review of highly-cited PE literature suggests that PE research engages with plurality and power to a very limited extent, and only marginally more so with language and translation. Examples are taken from the authors' own PE research on African swine fever in -Uganda, classical swine fever in Germany, peste des petits ruminants (PPR) in Eastern Europe, and Ugandan pastoralists' understanding of cattle disease to provide more detail as to why conventional PE studies might fail to record issues of plurality, power and language, and also to suggest how this can be addressed. With reference to the literature on the public sphere and democratic deliberation, and on language and interpretation, this paper concludes with some suggestions as to how to take plurality, power and language into greater consideration in PE studies in future, thus improving the validity and reliability of PE data.

Measurement Approaches to Partnership Success: Theory and Methods for Measuring Success in Long-Standing Community-Based Participatory Research Partnerships.

BACKGROUND: Numerous conceptual frameworks have been developed to understand how community-based participatory research (CBPR) partnerships function, and multiple measurement approaches have been designed to evaluate them. However, most measures are not validated, and have focused on new partnerships. To define and assess the meaning of success in long-standing CBPR partnerships, we are conducting a CBPR study, Measurement Approaches to Partnership Success (MAPS). In this article we describe the theoretical underpinnings and methodological approaches used. OBJECTIVES: The objectives of this study are to 1) develop a questionnaire to evaluate success in long-standing CBPR partnerships, 2) test the psychometric qualities of the questionnaire, 3) assess the relationships between key variables and refine the questionnaire and theoretical model, and 4) develop mechanisms and a feedback tool to apply partnership evaluation findings. METHODS: Methodological approaches have included: engaged a community-academic national Expert Panel; conducted key informant interviews with Expert Panel; conducted a scoping literature review; conducted a Delphi process with the Expert Panel; and revised the measurement instrument. Additional methods include: conduct cognitive interviews and pilot testing; revise and test final version of the questionnaire with long-standing CBPR partnerships; examine the reliability and validity; analyze the relationship among variables in the framework; revise the framework; and develop a feedback mechanism for sharing partnership evaluation results. CONCLUSIONS: Through the application of a theoretical model and multiple methodological approaches, the MAPS study will result in a validated measurement instrument and will develop procedures for effectively feeding back evaluation findings in order to strengthen authentic partnerships to achieve health equity.

A Community-Based Participatory Approach to the Development and Implementation of an HIV Health Behavior Intervention: Lessons Learned in Navigating Research and Practice Systems from Project HAPPY.

African American young adults continue to be disproportionately affected by HIV/AIDS. The Southern United States has been particularly affected by HIV/AIDS, accounting for 52% of the new HIV diagnoses. Efforts to reduce the burden of HIV among young African Americans are still needed. Project HAPPY (HIV/AIDS Prevention Project for Youth) was developed and implemented using a community-based participatory research (CBPR) model. There were several challenges that arose during implementation of Project HAPPY that included recruitment, partner engagement, and retention. The realities of implementing an HIV prevention project with urban adolescents is discussed in detail and strategies to overcome these challenges, using a CBPR approach are described. The lessons learned from CBPR implementation of Project HAPPY include: (1) Create a feedback loop to receive community input and guidance throughout the life of the project; (2) Periodic community inventory to determine who is providing similar services to avoid saturation; (3) Prepare for Alternative Partner Engagement; (4) Consult (formally and informally) with the Institutional Review Board prior to submitting proposed changes to avoid unnecessary delays in implementation; (5) Select meaningful incentives for your priority population; and (6) Maintain multiple points of contact with community partners to mitigate the effects of staff turnover.

What lessons it might teach us? Community engagement in HIV research.

PURPOSE OF REVIEW: Partnerships between academia and the community led to historic advances in HIV and paved the way for ongoing community engagement in research. Three decades later, we review the state of community engagement in HIV research, discuss best practices as supported by literature, explore innovations, and identify ongoing gaps in knowledge. RECENT FINDINGS: The community of people living with and at risk for HIV remains actively involved in the performance of HIV research. However, the extent of participation is highly variable despite long standing and established principles and guidelines of good participatory practices (GPP) and community-based participatory research (CBPR). Current literature reveals that known barriers to successful community engagement continue to exist such as power differences, and poor scientific or cultural competency literacy. Several high-quality studies share their experiences overcoming these barriers and demonstrate the potential of CBPR through reporting of qualitative and quantitative outcomes. SUMMARY: Greater time and attention should be placed on the development of community engagement in HIV research. A large body of literature, including innovative cross-cutting approaches, exists to guide and inform best practices and mitigate common barriers. However, we recognize that true growth and expansion of CBPR within HIV and in other fields will require a greater breadth of research reporting qualitative and quantitative outcomes.

Method to Improve the Effectiveness of Community-Based Participatory Research Projects: A Social Network Approach.

BACKGROUND: To successfully complete a community-based participatory research (CBPR) project, different types of relationships and different degrees of stakeholder investment are required, depending on context. We propose a method that will help assess relational connectivity and investment in many types of CBPR structures. Using data from a CBPR project, a network method is examined to test its effectiveness in identifying the CBPR project's strengths and weaknesses. METHODS: A social network method is proposed to increase CBPR effectiveness. This involves constructing various social networks related to the CBPR project: a current network, preferred networks for each collaborative stakeholder, and a projected network. These measure the state of the current network and provide a roadmap-via the stakeholder and projected networks-to what we believe may be an ideal CBPR network structure. RESULTS: Analyses indicated areas of the network where improvements could be made to expand collaboration. Network analysis revealed differing views of the preferred social network from various subgroups, indicating where modification of ties and perspectives of stakeholders could improve the collaboration. CONCLUSIONS: This social network method promotes analysis of CBPR factors and provides information for changes designed to improve CBPR collaborations and potentially lead to better outcomes.

Participatory Action Research With Older Adults: A Critical Interpretive Synthesis.

BACKGROUND AND OBJECTIVES: Given population aging, the meaningful involvement of older adults in influencing policy and programs through participatory action research (PAR) is increasingly vital. PAR holds promise for equitable participation, co-learning, community mobilization, and personal and social transformation, however, little scholarly attention has been given to critically evaluating how PAR has been taken up with older adults. The objective of this review was to critically evaluate the use of PAR with older adults. RESEARCH DESIGN AND METHODS: A critical interpretive synthesis (CIS) of 40 PAR studies with older adults was conducted. Critical engagement with the articles identified dominant tendencies, limits of these tendencies, and proposed ways forward. RESULTS: Within the majority of articles reviewed, older adults were not prominent partners in PAR given their often limited involvement in designing the research questions, learning research skills and knowledge, and implementing findings for change. Furthermore, power differentials between researchers and older adults were evident, as older adults were often positioned as participants rather than partners. Finally, this article demonstrates various boundaries on the foci of studies related to inclusivity and sustainability. DISCUSSION AND IMPLICATIONS: This study revealed that the promises PAR holds are often not fully realized in projects with older adults, given that they are rarely positioned as equitable partners, co-learners, or agents for change. The findings have the potential to stimulate further uptake of PAR research with an older adult population, highlighting areas for change in systems and research practices.

Framework for Ethical Community Engagement (ECE) with Underserved Populations in the Rural South: A Help for Bioethics and Healthcare Promotion.

Mainstream bioethics has dealt inadequately with issues of race, gender, and class that intersect and shape the life experiences of vulnerable populations in the U.S., such as Black women in the rural South who have faced bioethical and public health challenges throughout U.S. history. They have suffered from health disparities, challenges to their autonomy, inadequate access to quality health care, biomedical violations, and a healthcare system that has implicit bias and discrimination. Thus, we propose a framework for biomedical and behavioral researchers and organizations who seek to engage, ethically, such vulnerable communities. The goal of this Ethical Community Engagement (ECE) framework is to empower communities, respect autonomy, and address needs of populations that suffer from health disparities. The Tuskegee/Macon County Diabetes Coalition, formed to coordinate and share information promoting healthy living and habits among citizens of this area, is a demonstration of this ECE framework.

Best Practices for Community-Engaged Research with Pacific Islander Communities in the US and USAPI: A Scoping Review.

This scoping review identifies the best practices of community-based participatory research with Pacific Islanders in the United States and United States Affiliated Pacific Islands. Eighty-four articles from January 2000 to December 2017 were included in the review. Best practices included the importance of engaging Pacific Islander community leaders as research staff, community co-investigators, and community advisory board members. Best practices also focused on removing barriers to research by using participants' native languages, conducting research within the geographic community, and spending significant time to build trust. Novel best practices included honoring Pacific Islanders' cultural practices such as protocols for engagement, reciprocity, and social and spiritual inclusiveness and honoring Pacific Islanders' collectivist cultural structure. The goal of this scoping review is to aid community-academic partnerships working to improve the health of Pacific Islanders.

Assessing Research Activity and Capacity of Community-Based Organizations: Refinement of the CREAT Instrument Using the Delphi Method.

Community-based organizations (CBOs) are essential partners in community-engaged research, yet little is known about their research capacity. Community experts and organizations bring unique knowledge of the community to research partnerships, but standard validated measures of CBO research capacity do not yet exist. We report here on the refinement through a structured Delphi panel of a previously developed and piloted framework of CBO research capacity and an accompanying instrument, the Community REsearch Activity Assessment Tool (CREAT). A Delphi panel composed of twenty-three experts recruited from community (52%) and academic researchers (48%) from around the USA participated in five rounds of review to establish consensus regarding framework domains, operational definitions, and tool items. Panelists rated the importance of items on a 5-point Likert scale and assessed for the inclusion and language of items. Initial rounds of review began with reviewing the framework and definitions, with subsequent rounds including review of the full instrument. Concluding rounds brought back items that had not yet reached consensus for additional review. Median response values (MRV) and intra-quartile ranges (IQR) were calculated for each Likert item. Items with an MRV > 3.5 were deemed as having reached consensus and were retained. Language changes were made for items with MRV > 2.0 and < 3.5 and an IQR > 1.5. Items with MRV < 2.0 were excluded from the final tool. Panelist response rate was high (> 75%). Consensus was achieved for the inclusion of all domains, subdomains and operational definitions except "evidence-based practices." Extensive changes to the CREAT instrument were made for clarification, to provide additional detail and to ensure applicability for CBOs. The CREAT framework and tool was refined through input from community and academic researchers. Availability of a validated tool to assess research capacity of CBOs will support targeted research capacity building for community organizations and partners, thus strengthening collaborations.

Informed consent and community engagement in open field research: lessons for gene drive science.

BACKGROUND: The development of the CRISPR/Cas9 gene editing system has generated new possibilities for the use of gene drive constructs to reduce or suppress mosquito populations to levels that do not support disease transmission. Despite this prospect, social resistance to genetically modified organisms remains high. Gene drive open field research thus raises important questions regarding what is owed to those who may not consent to such research, or those could be affected by the proposed research, but whose consent is not solicited. The precise circumstances under which informed consent must be obtained, and from whom, requires careful consideration. Furthermore, appropriate engagement processes should be central to any introduction of genetically modified mosquitos in proposed target settings. DISCUSSION: In this work, international guidance documents on informed consent and engagement are reviewed and applied to the genetically modified mosquito research context. Five analogous research endeavours that involve area-wide / open field experiments are reviewed. The approach of each in respect to the solicitation of individual informed consent and community engagement are highlighted. CONCLUSIONS: While the solicitation of individual informed consent in host settings of gene drive field trials may not be possible or feasible in some instances, local community and stakeholder engagement will be key to building trust towards the proposed conduct of such research. In this regard, the approaches taken by investigators and sponsors of political science field research and weather modification field research should be avoided. Rather, proponents of gene drive field research should look to the Eliminate Dengue field trials, cluster randomised trials, and pragmatic clinical trials for guidance regarding how the solicitation of individual informed consent of host communities ought to be managed, and how these communities ought to be engaged.

The LEADER trial in type 2 diabetes: Were the characteristics and outcomes of the participants representative?

AIMS: To compare the characteristics and outcomes of people with type 2 diabetes recruited to the LEADER trial to those of participants in the contemporaneous community-based Fremantle Diabetes Study Phase II (FDS2) who fulfilled LEADER entry criteria. METHODS: Baseline characteristics of LEADER and LEADER-eligible FDS2 participants were compared using bivariate methods. Incidence rates of the primary (nonfatal myocardial infarction, nonfatal stroke, cardiovascular disease (CVD) death) and other outcomes in the LEADER placebo group were compared with those in LEADER-eligible FDS2 participants during 3.8 years after entry, the median LEADER follow-up. RESULTS: Of 1551 FDS2 type 2 participants, 323 (20.8%) were LEADER-eligible. Compared with the LEADER sample, they were an average 6 years older, and were less likely to be male, obese and to have prior CVD. There were 3.9 and 2.9 primary outcomes/100 patient-years in LEADER placebo-treated and FDS2 LEADER-eligible patients, respectively. Incidence rates for first myocardial infarction and stroke were 1.9 and 2.1 events/100 patient-years and 1.1 and 1.0 events/100 patient-years, respectively. FDS2 LEADER-eligible patients had a lower CVD death rate of 0.8 versus 1.6/100 patient-years in the LEADER placebo group, but their non-CVD mortality was greater (2.1 versus 1.0/100 patient-years). CONCLUSIONS: These data suggest recruitment bias in type 2 diabetes CVD outcome trials.

Community-led data collection using Open Data Kit for surveillance of animal African trypanosomiasis in Shimba hills, Kenya.

OBJECTIVE: In Sub-Saharan Africa, there is an increase in trypanosome non-susceptibility to multiple trypanocides, but limited information on judicious trypanocide use is accessible to smallholder farmers and agricultural stakeholders in disease endemic regions, resulting in widespread multi-drug resistance. Huge economic expenses and the laborious nature of extensive field studies have hindered collection of the requisite large-scale prospective datasets required to inform disease management. We examined the efficacy of community-led data collection strategies using smartphones by smallholder farmers to acquire robust datasets from the trypanosomiasis endemic Shimba hills region in Kenya. We used Open Data Kit, an open-source smartphone application development software, to create a data collection App. RESULTS: Our study provides proof of concept for the viability of using smartphone Apps to remotely collect reliable large-scale information from smallholder farmers and veterinary health care givers in resource poor settings. We show that these datasets can be reliably collated remotely, analysed, and the findings can inform policies that improve farming practices and economic wellbeing while restricting widespread multi-drug resistance. Moreover, this strategy can be used to monitor and manage other infectious diseases in other rural, resource poor settings.

Assessing research impact: Australian Research Council criteria and the case of Family Wellbeing research.

Researchers worldwide are increasingly reporting the societal impact of their research as part of national research productivity assessments. However, the challenges they encounter in developing their impact case studies against specified government assessment criteria and how pitfalls can be mitigated are not reported. This paper examines the key steps taken to develop an Aboriginal Family Wellbeing (FWB) empowerment research impact case study in the context of an Australian Research Council (ARC) pilot research impact assessment exercise and the challenges involved in applying the ARC criteria. The requirement that researchers demonstrate how their institutions support them to conduct impactful research has the potential to create supportive environments for researchers to be more responsive to the needs of users outside academia. However, the 15-year reference period for the associated research underpinning the reported impact and the focus on researcher's current institutional affiliation constitute potential constraints to demonstrating the true impact of research. For researchers working with Indigenous people, relationships that build over long periods of time, irrespective of university affiliation, are critical to conducting impactful research. A more open-ended time-frame, with no institutional restrictions for the 'associated research' provides the best opportunity to demonstrate the true benefits of research not only for Indigenous people but for Australian society more broadly.