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Community service-learning (CSL) is implemented mainly in smallscale classes. To date, little is known about how large-scale CSL courses could best be designed. This study seeks to identify benefits and potential strategies for designing large-scale CSL courses. A qualitative multiple case study was performed of three large-scale university courses (> 100 students) at Vrije Universiteit Amsterdam. Based on three core concepts of CSL, "reflection," "reciprocal learning," and "transformational learning experiences" were used as sensitizing topics in the thematic analysis. Implementing CSL in large-scale courses showed multiple benefits, such as the amount of work that could be completed and the potential to reduce students' individual workload. At the same time, realizing CSL in large-scale courses offered some challenges. This article presents nine hands-on strategies to implement CSL in large-scale courses.

Objective: The effectiveness of health education for patients has often been suboptimal. The neglect of a focus on empowerment and the presence of implementation barriers have been put forward as possible explanations for this. This study aimed to gain insight into how to co-create and develop an empowerment theory-based health education intervention for urological cancer patients. Design: Bravo's empowerment intervention model provided the theoretical foundations for the work undertaken with urological cancer patients in the Netherlands, using a participatory interactive learning and action approach. Method: Insights into needs regarding health education were obtained through semi-structured interviews with patients (n=22) and health professionals (n=17). Subsequently, eight co-creation sessions (n=30) were organised to translate these needs into a health education intervention. Results: An intervention in the form of digital patient information was developed. The information offered provides a view of the different care steps based on clinical guidelines but personalised in different ways. By connecting patients' empowerment needs to the information provided, and by taking health professionals' perspectives into account, barriers to health education were made visible and addressed. Conclusion: Patient empowerment theory proved valuable in better aligning a participatory research process with the empowerment needs of urological cancer patients. The programme theory developed may offer a valuable template for the development of future health education interventions.

Introduction: Despite the relatively high prevalence and challenges of visual impairments, limited funding is available for ophthalmologic research in the Netherlands. The research needs of people with visual impairments could aid the ophthalmological research community to optimally distribute research resources. The objective of the study presented here was to identify daily life problems, concerns, and wishes for future research from people with ophthalmological disorders, visual impairments, or deaf-blindness in order to set a research agenda that provides directions for future ophthalmology research. Methods: A four-phase participatory research approach was carried out using mixed methods to stimulate needs-articulation. Eight focus group discussions, seven feedback meetings, and seven interviews were organized, in which 89 consumers were consulted. Surveys to prioritize the topics were developed for both the medical and socio-psychological topics, which were completed by 784 and 631 respondents, respectively. Results: For the medical research agenda, research directly aimed at the cause of the ophthalmological disorders was considered more important than research aimed at improving quality of life. The themes "new and regenerative medicine," "cause and disease mechanism," "prevention and diagnosis," and "improvement of current treatments" were prioritized as high. For the socio-psychological agenda, needs concerning the "improvement of technologies for people with visual impairments" and "navigation, orientation, and accessibility of public space" were considered top priorities. Discussion: The identified research needs were relatively uniform across different consumer groups, providing opportunities for joint action. The research agenda included themes that can be taken up by "traditional" ophthalmological research, more broadly defined health care--related research, and more policy-influencing strategies. Implications for practitioners: The research needs could help researchers and policymakers in ophthalmology and visual impairment research to guide their research focus and legislation priorities.

While the right of children to be involved in decisions that concern them has been widely recognised, they are currently barely involved in guideline development in healthcare. This paper aims to explore what a future guideline development system in which children are meaningfully involved might look like and to reflect on the transition required to achieve this. We used a systems innovation perspective, exploring child participation within its systemic context and complexity. To this end, we conducted 24 interviews with various actors, about their ideas on and experiences with child participation in guideline development in the Dutch system (between August 2018 and September 2020), complemented with a scoping review. The current system is characterised by a high‐speed, rigid process that relies heavily on scientific evidence. Children are usually not included or taken seriously. The contours of a system in which children are meaningfully involved would differ markedly: children would be considered capable and taken seriously, and the guideline development process would be flexible, with time for interaction with children and discussion about the implications of their perspectives. We encountered few examples of child participation in guideline development worldwide, and believe our results are indicative of the situation in other Western countries. We propose the following actions: (1) Development of a discussion arena to create a joint vision on the aim of guideline development and subsequently the role of child participation therein. (2) Set up of transition experiments unbound by the current constellation, conducted by front‐runners who are open to children's perspectives. These are essential to clarify pathways towards a future in which the voices of children are meaningfully integrated. It remains to be seen, however, whether there are sufficient actors who feel the necessary urgency for change. [ABSTRACT FROM AUTHOR]

Higher education institutions are becoming increasingly embedded in their surrounding communities in order to learn from and respond to their often complex problems. Potential mutually beneficial--or reciprocal--collaborations between students, faculty members, and communities are being set up, but few researchers have explored how community actors are involved in collaborative decision-making processes. To fill this gap, this narrative review explores the current literature on community involvement processes in course-based higher education activities. Our research yielded a framework of definitions, guiding principles, and strategies to achieve more successful community involvement in this context. Seven guiding principles and related strategies are presented: alignment, shared ownership, balancing power relations, joint learning and knowledge creation, representation, immersion, and relationship building. The narrative review gave insights into the way community involvement is currently approached in course-based higher education activities and established a basis for understanding and shaping higher education-community collaboration. [ABSTRACT FROM AUTHOR]

Patients are increasingly involved in agenda setting in health research policy, but little is known about whether or not patients’ topics are translated into a funding programme and taken up by researchers. A qualitative evaluation of nine multi-stakeholder agenda-setting projects in the Netherlands was conducted. Document study and 54 semi-structured interviews with stakeholders were undertaken. Three strategies for the translation of research agendas into research programmes were identified: first, one-on-one translation; second, agendas were used to adapt general policies; and third, no translation. A number of factors, facilitating or impeding this translation, were identified, relating to the context or the process of programming and implementation. Context appeared to be crucial: positive attitudes towards patient involvement, good relations between stakeholders and supportive characteristics of organizations. Patient involvement was rarely sustained during programming and implementation. These insights contribute to more effective procedures for programming and implementing research agendas. [ABSTRACT FROM PUBLISHER]

Public engagement in health research is vital for addressing health disparities and promoting inclusivity among minoritised communities who often face barriers to accessing healthcare. Minoritised communities are groups, which have been made minorities by a dominant culture, race, ethnic group and/or social class and may experience health inequalities as a result. By incorporating diverse perspectives and lived experiences of minoritised communities, this approach aims to achieve contextually relevant research outcomes that reduce health inequalities and improve overall well-being. However, underrepresentation and lack of inclusivity challenges persist, necessitating the establishment of inclusive partnerships and grassroots participatory methodologies., To foster inclusive public engagement, it is important to overcome structural and cultural barriers, address socioeconomic challenges, and build trust with minoritised communities. This can be achieved by promoting a cultural shift that values inclusivity, providing comprehensive training to researchers, and collecting rigorous data on engagement demographics for transparency and accountability. Involving minoritised communities in decision-making through participatory research approaches enhances trust and yields successful outcomes. Additionally, allocating sufficient resources, collaborating in co-production, and prioritising the diverse needs and perspectives of stakeholders contribute to fostering inclusive public engagement in research., Overall, inclusive engagement practices particularly in primary care research have the potential to reduce health inequalities and cater to the unique requirements of minoritised communities, thereby creating more impactful outcomes and promoting equitable healthcare access.

Background: Noonan syndrome spectrum disorders (NSSDs) constitute a group within the Rasopathies, and are one of the largest groups of syndromes with impact on multi-organ involvement known. The extreme variability of the clinical phenotype is, among others, due to the numerous different genes that are involved, and the differences in clinical presentation over the life span. We have studied the needs of patients and their relatives aiming to develop, evaluate and choose focus in research, medical care and policy to better meet their perspectives., Methods: Using the participatory and interactive Dialogue method, 80 patients and relatives mentioned 53 different problems or needs (topics) that were categorized into eight themes. These themes and the topics within each theme, were subsequently prioritized by putting them in order of importance methodologically., Results: The four highest prioritized themes were: (1) Physical problems (non-musculoskeletal related); (2) Social, emotional and behavioral problems; (3) Cognitive functioning and information processing; and (4) Problems related to the musculoskeletal system. Nineteen out of the 53 topics were physical problems. According to the total group of respondents, the top 3 prioritized topics within theme 1 were coagulation problems, heart problems, and feeding problems. Also data stratified by age groups, phenotype (NS and other NSSDs) and gender showed some remarkable results. For instance, feeding problems were prioritized as the most important topic of the highest prioritized theme, according to patients aged 0-12 years. Also feeding problems show a significant difference in its prioritization according to female patients (2) compared to male patients (7). On the other hand, heart problems were not mentioned in the top three prioritized topics in the youngest age groups, although heart problems are generally considered most important for patients with NSSD., Conclusions: With our results we underline the importance of methodologically inventorying the needs of NSSD patients, not only at the group level, but to also focus on specific needs according to e.g. age, phenotype and gender. For instance, it is remarkable that both the current Clinical Guidelines and the Noonan Syndrome diagnostic criteria give little to no attention to feeding problems, though our results indicate that, to the youngest patients, these problems have top priority. A similar situation appears to apply to the clinical management of e.g. coagulation, neuropsychological and musculoskeletal problems (like physiotherapy or occupational therapy) and to a need for (educational) tools to support patients at school or at work. Our study may help to shape targeted (clinical) management, research and policy inside and outside medical (research) institutes and shed light on the complex phenotypes of NSSDs, the families' and patients' perspectives on the everyday consequences of the many different problems, as well as their needs., (© 2023. The Author(s).)

Objective: Both patients in the palliative phase of their disease and patients with limited health literacy (LHL) have an increased risk of being influenced by healthcare providers (HCPs) when making decisions. This study aims to explore to what extent persuasive communication occurs during shared decision-making (SDM) by (1) providing an overview of persuasive communication behaviours relevant for medical decision-making and (2) exemplifying these using real-life outpatient consultations., Methods: An exploratory qualitative design was applied: (1) brief literature review; (2) analysis of verbatim extracts from outpatient consultations and stimulated recall sessions with HCPs; and (3) stakeholder meetings., Results: 24 different persuasive communication behaviours were identified, which can be divided in seven categories: biased presentation of information, authoritative framing, probability framing, illusion of decisional control, normative framing, making assumptions and using emotions or feelings., Conclusions: Persuasive communication is multi-faceted in outpatient consultations. Although undesirable, it may prove useful in specific situations making it necessary to study the phenomenon more in depth and deepen our understanding of its mechanisms and impact., Practice Implications: Awareness among HCPs about the use of persuasive communication needs to be created through training and education. Also, HCPs need help in providing balanced information., (Copyright © 2021 Elsevier B.V. All rights reserved.)

Purpose: While patient engagement is becoming more customary in developing health products, its monitoring and evaluation to understand processes and enhance impact are challenging. This article describes a patient engagement monitoring and evaluation (PEME) framework, co-created and tailored to the context of community advisory boards (CABs) for rare diseases in Europe. It can be used to stimulate learning and evaluate impacts of engagement activities., Methods: A participatory approach was used in which data collection and analysis were iterative. The process was based on the principles of interactive learning and action and guided by the PEME framework. Data were collected via document analysis, reflection sessions, a questionnaire, and a workshop., Results: The tailored framework consists of a theory of change model with metrics explaining how CABs can reach their objectives. Of 61 identified metrics, 17 metrics for monitoring the patient engagement process and short-term outcomes were selected, and a "menu" for evaluating long-term impacts was created. Example metrics include "Industry representatives' understanding of patients' unmet needs;" "Feeling of trust between stakeholders;" and "Feeling of preparedness." "Alignment of research programs with patients' needs" was the highest-ranked metric for long-term impact., Conclusions: Findings suggest that process and short-term outcome metrics could be standardized across CABs, whereas long-term impact metrics may need to be tailored to the collaboration from a proposed menu. Accordingly, we recommend that others adapt and refine the PEME framework as appropriate. The next steps include implementing and testing the evaluation framework to stimulate learning and share impacts., Competing Interests: Conflicts of Interest Elena Zhuravleva is a shareholder in F. Hoffmann-La Roche Ltd., (© 2022 Aurora Health Care, Inc.)

Background: The Dialogue Model for research agenda-setting, involving multiple stakeholders including patients, was developed and validated in the Netherlands. However, there is little insight into whether and how patient involvement is sustained during the programming and implementation of research agendas., Aim: To understand how the Dialogue Model can be optimised by focusing on programming and implementation, in order to stimulate the inclusion of (the perspectives of) patients in research., Methods: A responsive evaluation of the programming and implementation phases of nine agenda-setting projects that had used the Dialogue Model for agenda-setting was conducted. Fifty-four semi-structured interviews were held with different stakeholders (patients, researchers, funding agencies). Three focus groups with patients, funding agencies and researchers (16 participants) were organized to validate the findings., Results: Patient involvement in programming and implementation of the research agendas was limited. This was partly related to poor programming and implementation, partly to pitfalls in earlier phases of the agenda-setting. Optimization of the Dialogue Model is possible by attending to the nature of the agenda and its intended use in earlier phases. Attention should also be given to the ambassadors and intended users of agenda topics. Support is needed during programming and implementation to organize patient involvement and adapt organizational structures like review procedures. In all phases the attitude to patient involvement, stakeholder participation, especially of researchers, and formal and informal relationships between parties need to be addressed to build a strong relationship with a shared goal., Conclusion: Patient involvement in agenda-setting is not automatically followed by patient involvement in programming and implementation. More attention should be paid, in earlier stages, to the attitude and engagement of researchers and funding agencies., (© 2014 John Wiley & Sons Ltd.)

Context: Most initiatives for patient involvement in guideline development have been carried out for chronic diseases. The involvement of patients with incidental and non-threatening diseases is more complicated. Little knowledge is available on how these patient groups can successfully be involved in guideline development., Objective: To assess the effectiveness of the involvement of gynaecological patients in the guideline development for resumption of (work) activities after surgery., Design: At three different stages patients were involved in the process: (i) three focus group discussions (FGDs) were organized, (ii) patients were involved for the instruction video, and (iii) patients tested the patient version of the clinical guideline. To assess the effectiveness, an evaluation framework was used. The guideline development process was divided into two parallel trajectories in which patients and professionals were consulted separately. Patients were primarily consulted for the development of the patient version, although their input also influenced the recommendations for resumption of (work) activities after surgery. Professionals were mainly involved in the development of the recommendations of the clinical guideline., Discussion and Conclusions: The involvement of gynaecological patients in the guideline development for resumption of (work) activities after surgery was successful in many respects. Consultation of individual patients by means of FGDs and with regular feedback moments has been rather effective for a guideline development process related to an incidental, non-threatening disease for which there is no patient organization. Patients' input contributed to applicability of the clinical guideline in daily practice. Increased patient involvement could be achieved by integration of the two parallel trajectories with additional participatory activities, such as a dialogue meeting., (© 2013 John Wiley & Sons Ltd.)