Engaging citizens living in vulnerable circumstances in research: a narrative review using a systematic search.

Although public engagement in research is increasingly popular, the involvement of citizens living in vulnerable circumstances is rarely realized. This narrative review aims to describe and critically analyse concerns and corresponding strategies, tools, and methods that could support the inclusion of these citizens in health research. The 40 studies that are included were thematically analysed using the socioecological model. Concerns originate most often on the intrapersonal level of the socioecological model, but concerns were also identified at institutional, community, and policy levels. It is thought-provoking that there is a lack of attention for the research and policy structure in which engagement practices are designed, implemented and evaluated. More research is needed to explore how these cultures could be changed in a way that promotes rather than restrains the engagement of citizens living in vulnerable circumstances in research and policymaking.

Unfortunately, citizens living in vulnerable circumstances are seldom engaged in research or policymaking. Think of, citizens living in poverty, those with an ethnic minority background or citizens with mental health issues are often excluded. Their involvement is, however, crucial to prevent growing (health) inequalities. To support the engagement of people living in vulnerable circumstances we conducted a literature review. We looked for strategies, tools, and methods that could support the inclusion of these citizens in research or policymaking. In total, 40 studies were identified and analysed. The main finding is that strategies tools, and methods are always context depended. Researchers should always ask: What works for whom in which context? We, therefore, stress the importance of close collaboration with experienced owners and community based organisations from the start. Also, more attention should be paid to how engagement practices are designed, implemented and evaluated. Think of, strict deadlines which limit the time to build trust. Or low budgets that limit the options to create the right preconditions, think of recruitment and data collection in multiple languages. To make sure that not only the 'usual suspects' but also citizens living in vulnerable circumstance will be engaged attention is needed from advocacy groups, research funders and researchers. All these actors need to reflect more often on the question what they can do to change the current research and policymaking culture in such a way that it will support the engagement of citizens living in vulnerable circumstances.

Research and innovation as a catalyst for food system transformation.

BACKGROUND: Food systems are associated with severe and persistent problems worldwide. Governance approaches aiming to foster sustainable transformation of food systems face several challenges due to the complex nature of food systems. SCOPE AND APPROACH: In this commentary we argue that addressing these governance challenges requires the development and adoption of novel research and innovation (R&I) approaches that will provide evidence to inform food system transformation and will serve as catalysts for change. We first elaborate on the complexity of food systems (transformation) and stress the need to move beyond traditional linear R&I approaches to be able to respond to persistent problems that affect food systems. Though integrated transdisciplinary approaches are promising, current R&I systems do not sufficiently support such endeavors. As such, we argue, we need strategies that trigger a double transformation - of food systems and of their R&I systems. KEY FINDINGS AND CONCLUSIONS: Seizing the opportunities to transform R&I systems has implications for how research is done - pointing to the need for competence development among researchers, policy makers and society in general - and requires specific governance interventions that stimulate a systemic approach. Such interventions should foster transdisciplinary and transformative research agendas that stimulate portfolios of projects that will reinforce one another, and stimulate innovative experiments to shape conditions for systemic change. In short, a thorough rethinking of the role of R&I as well as how it is funded is a crucial step towards the development of the integrative policies that are necessary to engender systemic change - in the food system and beyond.

Empowering Patients and Health Professionals to Address Sexual Health in the Context of Anorectal Malformations and Hirschsprung's Disease.

The aim of this study is to develop a tool that is aligned with patients' and health professionals' needs to address sexual health in the context of anorectal malformations and Hirschsprung's disease. A multiphased participatory action-research was conducted. First, an inventory of needs was made through interviews (11 patients, 11 professionals), three online focus groups (4 patients, 20 professionals), and a questionnaire (38 patients). Subsequently, four cocreation sessions with in total four patients and nine professionals were organized to translate the needs into a tool (in the form of a website). The websites' functionality was assessed via a questionnaire (n = 34). The website, directed to patients, their parents, and professionals, stimulates awareness, fills knowledge gaps, and shows possibilities for support. The website is expected to change restrictive attitudes toward sexual health and improve the legitimization of the topic needed for the allocation of resources and sexologists' involvement in current care pathways.

The Farmer Life School: experience from an innovative approach to HIV education among farmers in South Africa.

The Farmer Life School (FLS) is an innovative approach to integrating HIV education into life skills and technical training for farmers. This study aims to gain insight into the strengths and weaknesses of this relatively new approach, through the implementation of an adapted version in South Africa. The results are presented of a pilot with three groups of community gardeners, predominantly women, attending weekly sessions. Impact was assessed in terms of three key elements: participation, learning, and empowerment. Data were collected through extensive session reports, follow-up interviews, and reflection exercises with facilitators and participating groups and individuals. The results suggest that a group-based discovery learning approach such as the FLS has great potential to improve food security and wellbeing, while allowing participants to explore issues around HIV/AIDS. However, the analysis also shows that HIV/AIDS-related illness and death, and the factors that drive the epidemic and its impact, undermine farmers' ability to participate, the safety and trust required for learning, and the empowerment process. Participatory approaches such as the FLS require a thorough understanding of and adaptation to the context.