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There is an increasing recognition of the importance of patient engagement and involvement in health research, specifically within the field of rheumatology. In general, researchers in this specialty appreciate the value of patients as partners in research. In practice, however, the majority of researchers does not involve patients on their research teams. Many researchers find it difficult to match their needs for patient engagement and the potential contributions from individuals living with rheumatic disease. In this Viewpoint, we provide researchers and patients practical tips for matching ‘supply and demand,’ based on our own experiences as patient engagement consultants and trainers in rheumatology research. All authors started as a ‘naïve’ patient or caregiver, an identity that evolved through a process of ‘adversarial growth’: positive changes that are experienced as a result of the struggle with highly challenging life circumstances. Here, we introduce four stages of adversarial growth in the context of research. We submit that all types of patients have their own experiences, qualities and skills, and can add specific input to research. The recommendations for engagement are not strict directives. They are meant as starting points for discussion or interview. Regardless of individual qualities and knowledge, we believe that all patients engaged in research have a single goal in common: to contribute to research that ultimately will change the lives of many other patients.

Introduction Setting research priorities together with children and young people (CYP) in James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) is an example of involving CYP from the beginning of the research process. In these PSPs, CYP can be involved in steering groups, surveys, focus groups and the final priority‐setting workshop. The success of JLA PSPs is evident, but it is important to note that specific guidance has not been available on how to involve CYP aged under 18 years. We aimed to collect experiences and tips from CYP who have taken part in a priority‐setting exercise and to work with them to develop guidance for the JLA on involving CYP in PSPs. Methods This project was conducted in the United Kingdom and the Netherlands and was coordinated by the JLA. The project was overseen by a project group consisting of eight people, this group invited CYP who had participated in previous JLA PSPs. A workshop in the Netherlands and in the United Kingdom was organised. Throughout the workshops, the primary focus was exploring the first‐hand experiences of CYP. We developed ‘tips’ on how best to involve CYP. The project was conducted between May 2023 and February 2024. Results Four CYP were involved in the UK workshop and three in the Dutch workshop. One young person had to cancel and was interviewed separately. Tips are divided into three categories, to reflect the different elements of the JLA method: steering group, surveys and the final priority‐setting workshop including preparations and evaluations. Tips centred on three themes: making participants feel comfortable, making the process accessible and making the involvement of CYP meaningful. Discussion This project provides a list of 29 tips for involving CYP in JLA PSPs and guides future partnerships seeking to involve CYP. It guides teams during the planning, execution and completion of the project. Patient and Public Contribution Children and young people with experience in JLA PSPs shared their tips with us for involving CYP in future PSPs. We examined their perceptions of what worked well and their constructive insights into areas for refinement in involving CYP in developing a research agenda.

In 2018, an international Task Force formulated recommendations for treating Juvenile Idiopathic Arthritis (JIA) to target. The Task Force has not yet resolved three issues. The first issue is the lack of a single “best” target. The Task Force decided not to recommend the use of a specific instrument to assess inactive disease or remission. Recent studies underscore the use of a broad target definition. The second issue is the basic assumption that a treatment aggressively aimed at the target will have ‘domino effects’ on other treatment goals as well. Thus far, this assumption was not confirmed for pain, fatigue and stiffness. The third issue is shared decision-making, and the role of individual patient targets. Nowadays, patients and parents should have a more active role in choosing targets and their personal treatment goals. In our department the electronic medical records have been restructured in such a way that the patient’s personal treatment goals with a target date appears on the front page. The visualization of their specific personal goals helps us to have meaningful discussions on the individualized treatment strategy and to share decisions. In conclusion, a joint treat to target (T2T) strategy is a promising approach for JIA. The Task Force formulated valuable overarching principles and a first version of recommendations. However, implementation of T2T needs to capture more than just inactive disease. Patients and parents should have an active role in choosing personal targets as well.

Approximately 10% of medical students live with a chronic somatic or mental condition. They often feel alienated in the dominant culture of invulnerability in medical education. We developed the 'Medical Double Talents' (MDT) innovation to facilitate medical students living with chronic conditions - MDTs - to teach their fellow medical students. The goals of the MDT sessions are to increase medical students' empathy and compassion for patients with chronic conditions, to challenge the implicit culture of invulnerability, and to help MDTs turn their patient experiences into a strength. The MDT sessions were developed using a co-design approach, engaging medical students with chronic conditions at high levels of patient involvement. These students built a supportive community, received training, and shared their unique perspectives during teacher-facilitated guest lectures and small group discussions. In November 2024, 263 medical students participated in 24 MDT sessions. They reported highly appreciating the personal insights shared. The MDTs felt empowered by the experience as lecturers. The student-led dialogue enhanced engagement, though some students desired more information about the medical context before the session. These sessions complement traditional training. The MDT sessions challenge the implicit culture of invulnerability in medical education. The shared experiences can help foster empathy, self-reflection, and transformation in their peers. This innovation, integrated into Utrecht's curriculum, highlights the need for safe learning spaces and community building to implement similar programs elsewhere.

Introduction James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) produce ‘Top 10’ lists of health and care research priorities through a structured, shared decision‐making process with patients or service users, carers and health or care professionals who identify questions that are most important to them. To date, over 150 PSPs in different areas of health and care have published research priorities. Some PSPs share similar priorities, which could be combined, promoted and addressed through collaborative research to increase value and reduce research waste. Aim The aim of this study was to identify overarching themes common to JLA PSP priorities across different areas of health and care. Methods Our analysis included ‘Top 10’ research priorities produced by UK‐based JLA PSPs between 2016 and 2020. The priorities were coded deductively by the Health Research Classification System (HRCS) health category and research activity. We then carried out online workshops with patients, service users and carers to generate new codes not already captured by this framework. Within each code, multistakeholder inductive thematic analysis was used to identify overarching themes, defined as encompassing priorities from three or more PSPs covering two or more health categories. We used codesign methods to produce an interactive tool for end users to navigate the overarching themes. Results Five hundred and fifteen research priorities from 51 PSPs were included in our analysis. The priorities together encompassed 20 of 21 HRCS health categories, the most common being ‘generic health relevance’ (22%), ‘mental health’ (18%) and ‘musculoskeletal’ (14%). We identified 89 overarching themes and subthemes, which we organised into a hierarchy with seven top‐level themes: quality of life, caregivers and families, causes and prevention, screening and diagnosis, treatment and management, services and systems and social influences and impacts. Conclusion There are many overarching themes common to research priorities across multiple areas of health and care. To facilitate new research and research funding, we have developed an interactive tool to help researchers, funders and patients or service users to explore these priority topics. This is freely available to download online. Patient or Public Contribution Patients or service users and carers were involved throughout the study, including deciding the aims, designing the study, analysing priorities to identify themes, interpreting and reporting the findings.

Background Involving the end-users of scientific research (patients, carers and clinicians) in setting research priorities is important to formulate research questions that truly make a difference and are in tune with the needs of patients. We therefore aimed to generate a national research agenda for Juvenile Idiopathic Arthritis (JIA) together with patients, their caregivers and healthcare professionals through conducting a nationwide survey among these stakeholders. Methods The James Lind Alliance method was used, tailored with additional focus groups held to involve younger patients. First, research questions were gathered through an online and hardcopy survey. The received questions that were in scope were summarised and a literature search was performed to verify that questions were unanswered. Questions were ranked in the interim survey, and the final top 10 was chosen during a prioritisation workshop. Results Two hundred and seventy-eight respondents submitted 604 questions, of which 519 were in scope. Of these 604 questions, 81 were generated in the focus groups with younger children. The questions were summarised into 53 summary questions. An evidence checking process verified that all questions were unanswered. A total of 303 respondents prioritised the questions in the interim survey. Focus groups with children generated a top 5 of their most important questions. Combining this top 5 with the top 10s of patients, carers, and clinicians led to a top 21. Out of these, the top 10 research priorities were chosen during a final workshop. Research into pain and fatigue, personalised treatment strategies and aetiology were ranked high in the Top 10. Conclusions Through this study, the top 10 research priorities for JIA of patients, their caregivers and clinicians were identified to inform researchers and research funders of the research topics that matter most to them. The top priority involves the treatment and mechanisms behind persisting pain and fatigue when the disease is in remission.

Calls for evidence-informed public health policy-making often ignore that there are multiple, and often competing, bodies of potentially relevant evidence to which policy-makers have recourse in identifying policy priorities and taking decisions. In this paper, we illustrate how policy frames may favour the use of specific bodies of evidence. For the sixth Dutch Public Health Status and Foresight report (2014), possible future trends in population health and healthcare expenditure were used as a starting point for a deliberative dialogue with stakeholders to identify and formulate the most important societal challenges for the Dutch health system. Working with these stakeholders, we expanded these societal challenges into four normative perspectives on public health. These perspectives can be regarded as policy frames. In each of the perspectives, a specific body of evidence is favoured and other types of evidence are neglected. Crucial outcomes in one body may be regarded as irrelevant from other perspectives. Consequently, the results of research from a single body of evidence may not be helpful in the policy-making processes because policy-makers need to account for trade-offs between all competing interests and values. To support these policy processes, researchers need to combine qualitative and quantitative methodologies to address different outcomes from the start of their studies. We feel it is time for the research community to re-politicise the idea of evidence use and for policy-makers to demand research that helps them to account for all health-related policy goals. This is a prerequisite for real evidence-informed policy-making.

Background Patient involvement is most common during the first phases of a research project. Despite good intentions, maintaining meaningful collaborations throughout the research process doesn't seem easy. Several training programmes for researchers and patients have been developed to stimulate continuous involvement. These are mostly one-time training sessions at the start of a project, for researchers and patients separately. We aimed to co-create a prolonged side-by-side programme for pairs of patient representatives and researchers, to stimulate mutual learning from the start and throughout the research projects. Methods We developed a group training and peer-to-peer support programme lasting 2–3 years for 4–5 pairs of researchers and patient representatives working together on a research project. The programme took 30 h, spread over 6–8 meetings. The main goal was mutual and bi-directional learning and maintaining the collaboration throughout the research projects. From the start, the pairs were instructed to discuss communication, roles, expectations and responsibilities to prevent misunderstandings. The character of the meetings was intended to evolve from training and peer support into peer-group coaching and support for the whole group. The programme was not a fixed method, it was adjusted to the context and the needs of the participants. Results Thus far, the programme has been applied in 5 groups, with varying health topics and types of research. Patients’ prior knowledge of research methods and researchers' experience with patient involvement varied within the groups. As a result of the side-by-side training power imbalances within pairs were reduced. All participants gained knowledge and experience in patient involvement. In subsequent group coaching sessions, they discussed issues and dilemmas on an equal footing. Most pairs found their way of working together, adapted to the wishes and capabilities of both partners. Differences between pairs were found to improve the discussions. Conclusions We co-created a prolonged side-by-side programme for pairs of patient representatives and researchers, to stimulate mutual learning from the start and throughout the research projects. The programme proved feasible for groups with different research types and health conditions. It fulfils an unmet need for researchers, patients and funders. Plain English summary Patient involvement is most common at the start of a research project. Despite good intentions, maintaining meaningful collaborations throughout the research process doesn't seem easy. Several training programmes for researchers and patients have been developed to stimulate continuous involvement. These are mostly one-time training sessions, for researchers and patients separately. We suggest side-by-side training should allow patient representatives and researchers to learn from each other throughout the research project to stimulate mutual learning. We developed a 2–3 year group training and peer-group support programme for pairs of researchers and patient representatives working together on a research project. The main goal was mutual learning and maintaining the collaboration impactful throughout the research projects. The character of the meetings was intended to evolve from training into peer-group coaching. Thus far, the programme has been applied in 5 groups of 4–5 pairs each. From the start, the pairs were instructed to discuss roles, expectations and responsibilities to prevent misunderstandings. Most pairs found their form of collaboration throughout the programme. Differences between pairs proved to be very useful for discussion and mutual learning. At the end of the programme, the participants were able to reflect on patient involvement in research on an equal basis. The programme was suitable for groups with different research types and health conditions. The programme fulfilled an unmet need for researchers, patient representatives and funders. The programme was found to be feasible and the experiences to date are positive and promising.