Involving patients in health research requires a new way of working for all stakeholders involved, including researchers. This research aimed (1) to gain deeper insight into the experiences and needs of researchers regarding meaningful patient involvement and (2) to incorporate these insights into an online tool. This was done in a transdisciplinary research process, including three focus group discussions and three test sessions. We used the Social Cognitive Theory in the analysis process to reflect on how the tool addresses the complex personal, behavioural, and environmental factors that shape researchers’ experiences and needs. Identified factors were categorized into three themes: added value, perceived difficulty and patient-researcher role patterns. A tool was developed that addresses these factors, aiming to stimulate meaningful involvement by encouraging (self)reflection, experimentation, and learning-by-doing. It provides one element in a bigger systems approach to further stimulate patient involvement.
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.
The health research system faces critique for insufficiently matching patients’ needs. To combat this, patient involvement in health research decision-making has been advocated for. Such involvement requires a new way of thinking (culture), organising (structure) and working (practice) for all systems actors. Such a change is hard to achieve: despite patients being involved in various research phases, it is not standard practice and many difficulties remain. This thesis explores the state of the transition towards a system in which involvement is embedded in culture, structure and practice; investigates which factors influence this transition; and experiments with tools and strategies to support transition. I conducted three action-oriented projects. Case one explored child participation in guideline development. We found difficulties around involvement of adults in guideline development appear heightened for children: it hardly happens and children are not taken seriously, child participation is deemed difficult, the structure is rigid and a systems transformation seems not considered urgent by dominant actors. Case one appears in the predevelopment stage, as limited niche experiments by frontrunners have not yet impacted the dominant system. In case two we co-designed a tool stimulating and supporting health researchers to meaningfully involve patients in research design and conduct. Frontrunners and early adaptors are increasingly involving patients. However, involvement is not standard practice, and when it is done it is not always meaningful; it can easily become a checkbox action and impact on decision-making is limited. The traditional, positivistic research culture and rigid structures remain largely unaltered. Prerequisites from funders have not been accompanied by sufficiently accommodating structural changes. This case appears in the take-off phase; some changes to the dominant system appear, but the status quo remains unaltered. In case three, we experimented with the development of a uniquely broad innovation agenda. Patients perspectives not only were important in grounding our broad innovation agenda, this broad approach lead to insights into the issues that hinder the impact of research (agendas). This lead me to critically assess current involvement in agenda-setting. Literature indicates a systems transition for patient involvement in agenda-setting may be reaching the stabilisation phase, as a new culture, structure and practice start to cement. Involvement in agenda-setting has become common practice, and many systems actors have embraced it. Various standardised methods exist, with seemingly little radical innovation. Simultaneously, studies indicate that the impact of such research-agendas on research practice is limited. Thus, stabilisation of the current culture-structure-practice might be undesirable. Despite promising developments, involvement remains an add-on to the traditional system. Interestingly, collective discussion about the functionality of the current health research system, with regards to patient involvement, appears limited. A shared vision of a system in which meaningful involvement is embedded, or the changes that are needed is absent. Consequently, there is little sense of urgency for systems change. Patient involvement risks becoming an ‘intervention’ that must be ‘implemented’, instead of entailing a fundamentally new way of thinking, working and organising. Therefore, transition arenas are required, where different actors collectively discuss the fundamental beliefs, rationales and aims underpinning the health research system. Consequently the role of patient involvement herein and the structural changes required to make this meaningful, should be scrutinized. Experimental new practices and structures should complement this arena. Additionally, case one and two showed that professionals need support to acquire the new competencies required for meaningful involvement. We designed two support tools that stimulate an open and reflexive attitude and stimulate action. In the predevelopment stage, such tools can support frontrunners in experimentation. In later transition stages, they can support a wider group of professionals. However, tools must be accompanied by additional support structures.
Introduction: This study aimed to gain insight into the real-world complexity of the challenges experienced by patients, their significant others, care professionals and the work and education environment concerning rheumatic diseases as well as the interrelation between these challenges; it also aimed to prioritise the identified challenges.Method: Using the Dialog Model, 21 people with various rheumatic diseases, 24 care professionals, 9 significant others, and 3 education and work representatives were asked about rheumatic disease-related challenges and needs in a series of focus groups and interviews. Data were inductively coded and analysed, resulting in a mind map thematically displaying the challenges. The mind map was translated into a survey, and respondents (N = 1802) prioritised themes and challenges.Results: Of the six identified themes, 'physical complaints' was prioritised the most, followed by 'collaboration in healthcare', 'social and mental wellbeing', 'self-management', 'information and options in healthcare' and 'work and education'. Challenges of people with rheumatic diseases appeared to be complexly interrelated. For instance, fatigue and pain affect everyday functioning, but can also heavily impact social and mental wellbeing. To facilitate support for these challenges, which many patients desire, patients and care professionals said that better collaboration between primary and secondary care professionals is needed. Additionally, patients felt that their experiential expertise deserves more acknowledgement from care professionals. Results were similar across different rheumatic diseases. Conclusion:Many patients desire more support to manage life with their disease. To facilitate this, collaboration and communication between healthcare professionals, and between healthcare professionals and individual patients, should be improved.
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