Ethical considerations in public engagement: developing tools for assessing the boundaries of research and involvement.

Public engagement with research (PEwR) has become increasingly integral to research practices. This paper explores the process and outcomes of a collaborative effort to address the ethical implications of PEwR activities and develop tools to navigate them within the context of a University Medical School. The activities this paper reflects on aimed to establish boundaries between research data collection and PEwR activities, support colleagues in identifying the ethical considerations relevant to their planned activities, and build confidence and capacity among staff to conduct PEwR projects. The development process involved the creation of a taxonomy outlining key terms used in PEwR work, a self-assessment tool to evaluate the need for formal ethical review, and a code of conduct for ethical PEwR. These tools were refined through iterative discussions and feedback from stakeholders, resulting in practical guidance for researchers navigating the ethical complexities of PEwR. Additionally, reflective prompts were developed to guide researchers in planning and conducting engagement activities, addressing a crucial aspect often overlooked in formal ethical review processes. The paper reflects on the broader regulatory landscape and the limitations of existing approval and governance processes, and prompts critical reflection on the compatibility of formal approval processes with the ethos of PEwR. Overall, the paper offers insights and practical guidance for researchers and institutions grappling with ethical considerations in PEwR, contributing to the ongoing conversation surrounding responsible research practices.

Perspectives of researchers and clinicians on patient and public involvement (PPI) in preclinical spinal cord research: An interview study.

INTRODUCTION: Patient and public involvement (PPI) in research is an embedded practice in clinical research, however, its role in preclinical or laboratory-based research is less well established and presents specific challenges. This study aimed to explore the perspectives of two key stakeholder groups, preclinical researchers and clinicians on PPI in preclinical research, using spinal cord research as a case study. METHODS: Semi-structured interviews were conducted online with 11 clinicians and 11 preclinical researchers all working in the area of spinal cord injury (SCI). Interviews were transcribed verbatim and analysed thematically. FINDINGS: Nine themes were developed through analysis. Participants' perspectives included that people living with SCI had a right to be involved, that PPI can improve the relevance of preclinical research, and that PPI can positively impact the experiences of researchers. They identified the distance between lab-based research and the daily experiences of living with SCI to be a barrier and proactive management of accessibility and the motivated and networked SCI community as key facilitators. To develop strong partnerships, participants suggested setting clear expectations, ensuring good communication, and demonstrating respect for the time of PPI contributors involved in the research. CONCLUSIONS: While traditionally PPI has been more commonly associated with clinical research, participants identified several potential benefits of PPI in preclinical spinal cord research that have applicability to preclinical researchers more broadly. Preclinical spinal researchers should explore how to include PPI in their work. PATIENT OR PUBLIC CONTRIBUTION: This study was conducted as part of a broader project aiming to develop an evidence base for preclinical PPI that draws on a 5-year preclinical research programme focused on the development of advanced biomaterials for spinal cord repair as a case study. A PPI Advisory Panel comprising seriously injured rugby players, clinicians, preclinical researchers, and PPI facilitators collaborated as co-authors on the conceptualisation, design of the interview protocol, data analysis and writing of this manuscript.

Public participation in healthcare students' education: An umbrella review.

BACKGROUND: An often-hidden element in healthcare students' education is the pedagogy of public involvement, yet public participation can result in deep learning for students with positive impacts on the public who participate. OBJECTIVE: This article aimed to synthesize published literature reviews that described the impact of public participation in healthcare students' education. SEARCH STRATEGY: We searched MEDLINE, EMBASE, ERIC, PsychINFO, CINAHL, PubMed, JBI Database of Systematic Reviews and Implementation Reports, the Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects and the PROSPERO register for literature reviews on public participation in healthcare students' education. INCLUSION CRITERIA: Reviews published in the last 10 years were included if they described patient or public participation in healthcare students' education and reported the impacts on students, the public, curricula or healthcare systems. DATA EXTRACTION AND SYNTHESIS: Data were extracted using a predesigned data extraction form and narratively synthesized. MAIN RESULTS: Twenty reviews met our inclusion criteria reporting on outcomes related to students, the public, curriculum and future professional practice. DISCUSSION AND CONCLUSION: Our findings raise awareness of the benefits and challenges of public participation in healthcare students' education and may inform future research exploring how public participation can best be utilized in higher education. PATIENT OR PUBLIC CONTRIBUTION: This review was inspired by conversations with public healthcare consumers who saw value in public participation in healthcare students' education. Studies included involved public participants, providing a deeper understanding of the impacts of public participation in healthcare students' education.

Stakeholder engagement to develop a directory of COVID-19 related mental health services in Vietnam: reflections on a participatory approach.

The COVID-19 pandemic led to a rise of mental health issues amongst Vietnamese communities in Vietnam and the diaspora. However, there were few resources and no directory of services available for people seeking mental health support in Vietnam. In response to this need, we initiated an engagement project to improve Vietnamese communities' access to mental health support. This project aimed to involve stakeholders in the development of a directory of resources in order to ensure that it met local needs. The phases of development included: (1) reviewing desk research findings; (2) reviewing the list of mental health support services that we could find; (3) verifying the first draft of the directory; (4) helping disseminate the directory; and (5) updating the directory. In February 2022 the first edition of the mental health directory for Vietnamese and foreigners living in Vietnam was published. In this paper we describe the iterative approach taken to developing a resource that would have maximum utility for the target communities. We describe the process of partnering with people with lived experience, community members and expert stakeholders in this process, and reflect on how this strengthened the outcomes in terms of the relevance of the output, the research uptake and the access for the wider community. We believe that it is important to publish examples of community engagement projects in order to demonstrate good practise and promote increased involvement of communities in research.

The COVID-19 pandemic led to a rise of mental health issues amongst Vietnamese communities in Vietnam and those living overseas. However, there are few resources and no directory of services available for people seeking mental health support in Vietnam. In response to this need, the public engagement team at the Oxford University Clinical Research Unit in Ho Chi Minh city, Vietnam, worked with local experts and community groups to create a directory of resources available to support mental health. In February 2022, the first edition of the mental health directory for Vietnamese and foreigners living in Vietnam was published. In this paper, we describe the steps we took to developing the resource. We describe the process of partnering with people with lived experience, community members and expert stakeholders in this process, and reflect how their involvement helped create a more relevant resource.

The art, science and technology studies movement: An essay review.

This is a review essay based primarily on the 2021 Routledge Handbook of Art, Science, and Technology Studies, edited by Hannah Star Rogers, Megan K. Halpern, Dehlia Hannah, and Kathryn de Ridder-Vignone. It focuses particularly on the use of art for public engagement with science and technology and it also draws upon the following books: Dialogues Between Artistic Research and Science and Technology Studies (2023), edited by Henk Borgdorff, Peter Peters, and Trevor Pinch, Making Art Work: How Cold War Engineers and Artists Forged a New Creative Culture (2020) by Patrick McCray, and Art, Science, and the Politics of Knowledge (2022), by Hannah Star Rogers.

Identifying health and healthcare priorities in rural areas: A concept mapping study informed by consumers, health professionals and researchers.

BACKGROUND: It is vital that health service delivery and health interventions address patients' needs or preferences, are relevant for practice and can be implemented. Involving those who will use or deliver healthcare in priority-setting can lead to health service delivery and research that is more meaningful and impactful. This is particularly crucial in rural communities, where limited resources and disparities in healthcare and health outcomes are often more pronounced. The aim of this study was to determine the health and healthcare priorities in rural communities using a region-wide community engagement approach. METHODS: This multi-methods study was conducted in five rural communities in the Grampians region, Western Victoria, Australia. It involved six concept mapping steps: (1) preparation, (2) generation (brainstorming statements and identifying rating criteria), (3) structuring statements (sorting and rating statements), (4) representation of statements, (5) interpretation of the concept map and (6) utilization. Community forums, surveys and stakeholder consultations with community members and health professionals were used in Step 2. An innovative online group concept mapping platform, involving consumers, health professionals and researchers was used in Step 3. RESULTS: Overall, 117 community members and 70 health professionals identified 400 health and healthcare issues. Six stakeholder consultation sessions (with 16 community members and 16 health professionals) identified three key values for prioritizing health issues: equal access for equal need, effectiveness and impact (number of people affected). Actionable priorities for healthcare delivery were largely related to access issues, such as the challenges navigating the healthcare system, particularly for people with mental health issues; the lack of sufficient general practitioners and other health providers; the high travel costs; and poor internet coverage often impacting technology-based interventions for people in rural areas. CONCLUSIONS: This study identified actionable health and healthcare priorities from the perspective of healthcare service users and providers in rural communities in Western Victoria. Issues related to access, such as the inequities in healthcare costs, the perceived lack of quality and availability of services, particularly in mental health and disability, were identified as priorities. These insights can guide future research, policy-making and resource allocation efforts to improve healthcare access, quality and equity in rural communities.

The positive impact of introducing public engagement as a self-directed learning strategy in undergraduate nervous system education.

Undergraduate medical education in China has shifted from educator-centered learning to self-directed learning (SDL) over the past few decades. Careful design of public engagement activities can enable SDL and empower medical students to pioneer public health and patient safety education. In this study, we aimed to innovate nervous system education by implementing a public engagement model that empowers students to learn about the nervous system by teaching the public. Our goal was to generate greater interest in the nervous system at the undergraduate stage, inspire students' enthusiasm to pursue a career in neurology, and ultimately, contribute to health promotion. During the nervous system module of the second year of the undergraduate curriculum, students were given the option to participate in the public engagement model. Participants were tasked with the creation of educational videos focusing on knowledge, attitudes, and behaviors associated with the prevention and management of neurological diseases and their complications. The videos were made accessible to the general public through the university's official channel at the end of the semester. A total of 117 students (67.24% of all students) chose to participate in the public engagement model. Female students and those with higher Grade Point Averages in the present semester were more likely to participate. The model received strong positive feedback from participants, as students found the public engagement task helpful in learning about the nervous system module as well as in enhancing their public engagement skills. Despite the time and effort consumption, participating in the public engagement task did not affect students' exam scores. The public engagement task is an innovative model in the nervous system curriculum and has the potential to be integrated into a broader range of undergraduate courses. It empowers medical students to pioneer public health and patient safety education.

Engaging people with lived experience of dementia in research meetings and events: insights from multiple perspectives.

This perspective article describes the experiences of engaging people with lived experience of dementia in research meetings and events from the perspectives of people with lived experience, researchers, trainees, audience members and others. We outline examples of engagement from different events and describe a video project, initiated by people with lived experience, conveying diverse views about becoming integral collaborators in the Canadian Consortium on Neurodegeneration in Aging (CCNA) annual Partners Forum and Science Days. We also report evaluation data from audiences and present a series of tips and strategies for facilitating this engagement, including practical considerations for supporting people with lived experience.

Promoting public engagement in interdisciplinary biological systems education by leveraging American sports-inspired bracket contests on social media and web.

The complexity of modern biology poses challenges in fostering interdisciplinary understanding, particularly between practicing scientists and the public. Furthermore, scientists often lack formal training in science communication, despite various motivations to engage the public. The science literacy of the public in the biological sciences can also vary across socio-economic and cultural backgrounds. Leveraging popular culture and informal learning practices to promote active learning offers promising avenues to enhance public understanding of biological systems. Organized sports hold collective recognition across various communities and cultures, serving as a means to bring people together. Notably, the NCAA March Madness event holds widespread national and international popularity, presenting an opportunity to laterally apply this concept to promote science communication within STEM and biology education. An educational social media and web-based contest tool was developed integrating NCAA-inspired brackets with animal biological systems concepts. The tool featured tournament-style matchups based on animal biological systems, interesting animal facts, and a voting system, all housed within a user-friendly interface. To encourage regular user access to the tool, graphic designs were developed for all social media posts to aid in visual recruitment to the voting website. Based on online metrics, the use of social media garnered repeat users across both the public and educators. The latter noted the tool's simplicity and informative content. Application of this social media and web-based bracket contest tool, which leverages informal settings for active learning for use in biology education, can foster science communication to engage audiences, improve comprehension, and promote interdisciplinary biology education.

Unearthing new learning opportunities: adapting and innovating through the 'Antibiotics under our feet' citizen science project in Scotland during COVID-19.

'Antibiotics under our feet' is a Scottish citizen science project that aimed to raise science capital in primary school learners and their teachers through measurement of microbial diversity in urban soil samples in the search for novel antimicrobial compounds. Resistance to antibiotics is rising, posing a global threat to human health. Furthermore, science, technology, engineering and mathematics (STEM) skills are in crisis, jeopardising our capacity to mobilise as a society to fight antimicrobial resistance (AMR). Originally conceived as a response to the AMR and STEM emergencies, our project was hit by the unprecedented challenge of engaging with schools during the COVID-19 pandemic. We describe how we adapted our project to enable remote participation from primary schools and youth groups, utilising COVID-19 response initiatives as opportunities for multi-level co-creation of resources with learners in primary, secondary, and higher education. We produced portable kit boxes for soil sample collection with learning activities and videos linked to the Scottish Curriculum for Excellence. We also addressed glaring project specific content gaps relating to microbiology on English and Simple English Wikipedia. Our hybrid model of working extended our geographical reach and broadened inclusion. We present here the inception, implementation, digital resource outputs, and discussion of pedagogical aspects of 'Antibiotics under our feet'. Our strategies and insights are applicable post-pandemic for educators to develop STEM skills using soil, microbes, and antibiotics as a theme.

The pillars of the sea: strategies to achieve successful marine citizen science programs in the Mediterranean area.

Marine ecosystems are facing a dramatic loss of biodiversity worldwide, together with a widespread collapse of habitats and their functionality. In this context, Marine Citizen Science (MCS) can be a powerful tool to monitor these changes over time. The flowering of very well-structured international projects is strengthening the scientific credibility of MCS data, especially when data are collected after specifically designed training programs and shared in public user-friendly repositories. Here we present a new perspective on the use of MCS in the Mediterranean area, along with the main benefits for the stakeholders (i.e., diving centers, trainers, and policymakers) and the users (i.e., divers), resumed in three pillars: Pillar I - MCS as a tool for the site valorization; Pillar II - MCS as a new career opportunity for graduated students; Pillar III - MCS as a business opportunity for diving centers. In the frame of the Quintuple Helix Approach, for which there is a strong need of a socioecological transition of the society and economy, we show how MCS can be a win-win-win solution for all the actors involved, providing the vision for new and highly qualified job and business opportunities for the diving sector.

European survey: citizens' attitudes on personalized medicine, genetic testing and health data sharing - design and delivery.

In the transformative landscape of healthcare, personalized medicine emerges as a pivotal shift, harnessing genetic, environmental and lifestyle data to tailor medical treatments for enhanced outcomes and cost efficiency. Central to its success is public engagement and consent to share health data amidst rising data privacy concerns. To investigate European public opinion on this paradigm, we executed a comprehensive cross-sectional survey to capture the general public's views on personalized medicine and data-sharing modalities, including digital tools and electronic records. The survey was distributed in eight major European Union countries and the results aim at guiding future policymaking and trust-building measures for secure health data exchange. This article delineates our methodological approach, whereby survey findings will be expounded in subsequent publications.

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Community dialogue to enhance understanding of beliefs, behaviours and barriers to care for people living with liver disease and HBV infection in KwaZulu Natal, South Africa.

Introduction: The World Health Organisation (WHO) has set targets for the elimination of Hepatitis B virus (HBV), which include preventing new infections and reducing deaths. We explored beliefs, behaviours and barriers to diagnosis, prevention and treatment for people living with HBV infection (PLWHB) and those with liver disease in a rural South African population in KwaZulu-Natal, to gather information to inform research and support the development of improved clinical and public health services. Methods: Using an interdisciplinary approach (combining public engagement, social science, clinical and laboratory team members) we conducted a community dialogue with members of the Africa Health Research Institute (AHRI) Community Advisory Board (CAB). Notes from the discussions were used to write up an account from which themes were identified during a team debrief session for data analysis. Results: There was a lack of knowledge and awareness of HBV infection and transmission and prevention amongst CAB members, also reported among community members and healthcare workers. The participants recognised liver disease symptoms. Perceived causes of liver disease reported by the CAB were alcohol and non-adherence to HIV treatment. Barriers to care included stigma, poverty, and delays in referrals for HBV diagnosis and management. Conclusion: Understanding barriers to care is important to shape future services for diagnosis, treatment and prevention of HBV and liver disease which are accessible, affordable and acceptable to the local population. Education, awareness and advocacy for improved liver health care pathways are required to make them effective for local communities.

The Development of Principles for Patient and Public Involvement (PPI) in Preclinical Spinal Cord Research: A Modified Delphi Study.

INTRODUCTION: There is currently limited guidance for researchers on Patient and Public Involvement (PPI) for preclinical spinal cord research, leading to uncertainty about design and implementation. This study aimed to develop evidence-informed principles to support preclinical spinal cord researchers to incorporate PPI into their research. METHODS: This study used a modified Delphi method with the aim of establishing consensus on a set of principles for PPI in spinal cord research. Thirty-eight stakeholders including researchers, clinicians and people living with spinal cord injury took part in the expert panel. Participants were asked to rate their agreement with a series of statements relating to PPI in preclinical spinal cord research over two rounds. As part of Round 2, they were also asked to rate statements as essential or desirable. RESULTS: Thirty-eight statements were included in Round 1, after which five statements were amended and two additional statements were added. After Round 2, consensus (> 75% agreement) was reached for a total of 27 principles, with 13 rated as essential and 14 rated as desirable. The principles with highest agreement related to diversity in representation among PPI contributors, clarity of the purpose of PPI and effective communication. CONCLUSION: This research developed a previously unavailable set of evidence-informed principles to inform PPI in preclinical spinal cord research. These principles provide guidance for researchers seeking to conduct PPI in preclinical spinal cord research and may also inform PPI in other preclinical disciplines. PATIENT AND PUBLIC INVOLVEMENT STATEMENT: This study was conducted as part of a project aiming to develop PPI in preclinical spinal cord injury research associated with an ongoing research collaboration funded by the Irish Rugby Football Union Charitable Trust (IRFU CT) and the Science Foundation Ireland Centre for Advanced Materials and BioEngineering Research (SFI AMBER), with research conducted by the Tissue Engineering Research Group (TERG) at the RCSI University of Medicine and Health Sciences. The project aims to develop an advanced biomaterials platform for spinal cord repair and includes a PPI Advisory Panel comprising researchers, clinicians and seriously injured rugby players to oversee the work of the project. PPI is included in this study through the involvement of members of the PPI Advisory Panel in the conceptualisation of this research, review of findings, identification of key points for discussion and preparation of the study manuscript as co-authors.

Embedding community and public voices in co-created solutions to mitigate antimicrobial resistance (AMR) in Thailand using the 'Responsive Dialogues' public engagement framework.

The use of antimicrobials in Thailand has been reported as one of the highest in the world in human and animal sectors. Our engagement project aimed to improve our understanding of the issue of antimicrobial use and antimicrobial resistance (AMR) among adult Thai communities, and co-create locally relevant solutions to AMR, especially those focusing on raising awareness to improve related policies in Thailand.We conducted a series of online and in-person 'conversations' according to Wellcome's 'Responsive Dialogues' engagement approach, designed to bring together different voices to understand complex AMR problems and find potential solutions. This approach enabled key AMR stakeholders and policy makers to hear directly from communities and members of the public, and vice versa. Conversations events took place between 25 November 2020 and 8 July 2022, and we engaged 179 AMR key stakeholders and members of the public across Thailand.The issues found were: there were quite a lot of misunderstandings around antimicrobials and AMR; participants felt that communications and engagement around antimicrobial resistance had limited reach and impact; asking for and taking antibiotics for self-limiting ailments is a social norm in Thailand; and there appeared to be a wide availability of cheap antimicrobials. To mitigate the spread of AMR, participants suggested that the messages around AMR should be tailored to the target audience, there should be more initiatives to increase general health literacy, there should be increased availability of AMR related information at the local level and there should be increased local leadership of AMR mitigation efforts.Trial registration Thaiclinicaltrials.org registration: TCTR20210528003 (28/05/2021).

Using science communication research to practice iterative engagement in collaborative nutrient management.

Thoughtful science communication is essential for the success of collaborative, transdisciplinary environmental research. We present an innovative evaluation of a four-year pilot project that took a highly engaged and collaborative approach to managing excess nutrients in the Cape Cod region of Massachusetts, USA. The evaluation approach included mid- and end-of-project interviews with researchers and project partners and a reflection from the lead science communication researcher. We found that an effective science communication evaluation needs to be (1) adaptive, (2) multistage, (3) holistic and objective-based, and (4) democratic and reflexive. Results demonstrate that formative and end-of-project science communication evaluation of research projects lead to improved engagement that better meets all collaborators' needs.

Governing with public engagement: an anticipatory approach to human genome editing.

In response to calls for public engagement on human genome editing (HGE), which intensified after the 2018 He Jiankui scandal that resulted in the implantation of genetically modified embryos, we detail an anticipatory approach to the governance of HGE. By soliciting multidisciplinary experts' input on the drivers and uncertainties of HGE development, we developed a set of plausible future scenarios to ascertain publics values-specifically, their hopes and concerns regarding the novel technology and its applications. In turn, we gathered a subset of multidisciplinary experts to propose governance recommendations for HGE that incorporate identified publics' values. These recommendations include: (1) continued participatory public engagement; (2) international harmonization and transparency of multiple governance levers such as professional and scientific societies, funders, and regulators; and (3) development of a formal whistleblower framework.

Citizen silence: Missed opportunities in citizen science.

Citizen science is personal. Participation is contingent on the citizens' connection to a topic or to interpersonal relationships meaningful to them. But from the peer-reviewed literature, scientists appear to have an acquisitive data-centered relationship with citizens. This has spurred ethical and pragmatic criticisms of extractive relationships with citizen scientists. We suggest five practical steps to shift citizen-science research from extractive to relational, reorienting the research process and providing reciprocal benefits to researchers and citizen scientists. By virtue of their interests and experience within their local environments, citizen scientists have expertise that, if engaged, can improve research methods and product design decisions. To boost the value of scientific outputs to society and participants, citizen-science research teams should rethink how they engage and value volunteers.

Combining postgraduate research training, public engagement, and primary school science education-a Superbugs Master (MSc) class.

Since 2018, the 'Superbugs' initiative at Cardiff University (United Kingdom) has been delivering projects that take a research-driven approach to public engagement, involving rigorous evaluation of the methodologies of delivery and the mechanics of communication. The overall aim of Superbugs is to raise awareness and improve public knowledge of microbiology, infection and antimicrobial resistance (AMR). In the present project, four postgraduate students were recruited to undertake research projects as part of their Master of Science (MSc) studies. After a period of literature appraisals, the students chose to focus on the topic of personal and food hygiene and were tasked with collecting information on effective strategies for educating young children. Taking advantage of a focus group of primary school teachers, the students then designed evidence-informed educational activities and the evaluation strategies by which the impact of these would be assessed. A pilot delivery of these activities was carried out in a community setting at a local public library, before final delivery as part of a school outreach workshop. The MSc students produced three new elements of educational material; a story book, a treasure hunt and an interactive card game, primarily built around the concepts of challenge and gamification. Feedback collected from primary school pupils aged 6-7 years old and teachers indicated that the activities developed were successful in both being engaging to young people and resulting in an improved knowledge on the chosen topics. Taken together, we present evidence that postgraduate research training, underpinned by active and service learning, represents a valid and effective way of delivering impactful public engagement. In turn, the experience holds benefit for the students not only in terms of their academic study and core scientific skills, but also their wider appreciation and confidence in being effective engagers and science communicators.

Engaging a community to focus on upper limb function in people with multiple sclerosis: the ThinkHand campaign case study.

BACKGROUND: Solving complex research challenges requires innovative thinking and alternative approaches to traditional methods. One such example is the problem of arm and hand, or upper limb function in multiple sclerosis (MS), a neurological condition affecting approximately 2.9 million people worldwide and more than 150,000 in the United Kingdom. Historically, clinical trials and research have focused on mobility and walking ability. This excludes a large number of patients who are wheelchair users, limiting their quality of life and restricting access to possibly helpful medications. To address this issue, the ThinkHand campaign was launched in 2016, aiming to raise awareness about the importance of upper limb function in MS and develop alternative ways to measure, record, and account for hand and arm function changes. MAIN BODY: The campaign utilised innovative strategies at scientific conferences and online surveys to engage people affected by MS, healthcare professionals, charities, and researchers in discussing the importance of preserving upper limb function. Through co-design and interdisciplinary collaboration, the campaign developed new tools like the low-cost cardboard version of the Nine-Hole Peg Test, facilitating remote monitoring of hand function. Additionally, the campaign co-created the "Under & Over" rehabilitation tool, allowing individuals with advanced MS to participate in a remote rehabilitation program.The impact of the ThinkHand campaign has been significant, helping to shift the focus of both academic and industry-supported trials, including the O'HAND and ChariotMS trials, both using upper limb function as their primary end point. The campaign's patient-centred approach highlighted the importance of recognising patients' perspectives in research and challenged established assumptions and practices. It demonstrated the effectiveness of interdisciplinary collaboration, systems thinking, and co-creation with stakeholders in tackling complex problems. CONCLUSION: The ThinkHand campaign provides valuable insights for health research practices. By involving patients at all stages, researchers can gain a deeper understanding of the impact of disease on their lives, identify gaps and focus research on their needs. Experimentation and iteration can lead to innovative solutions, and openness to unconventional methods can drive widespread change. The ThinkHand campaign exemplifies the potential of patient-centred approaches to address complex research challenges and revolutionise the field of MS research and management. Embracing such approaches will contribute to more inclusive and impactful research in the future.

Solving complex research challenges requires creative thinking and new ways of doing things. One such challenge is understanding the problems with arm and hand function in multiple sclerosis (MS), a neurological condition that affects more than 150,000 in the United Kingdom. In the past, research focused mainly on walking ability, leaving out many people who use wheelchairs.To tackle this issue, we created the ThinkHand campaign in 2016. Its goal was to raise awareness about the importance of hand and arm function for people with MS (pwMS) and find better ways to measure changes in these functions such that they can become outcomes in clinical trials. This could provide a pathway to better treatments for pwMS who cannot walk.The campaign used various methods, including surveys, social media posts, exhibitions and music to involve pwMS, healthcare professionals, charities, and researchers in discussions about the issues. Working together, they created tools to support pwMS, particularly those at an advanced stage of the disease (pwAMS), to take part in research and measure their hand and arm function. Through our collaborative approach focusing on patients' perspectives, the campaign challenged old ideas and deeply embedded practices. It showed that collaboration between different areas of expertise involving pwMS at all stages of research can help solve complex problems. This campaign teaches us valuable lessons for health research. When researchers listen to patients and try new things, they can better understand how a disease affects people's lives and develop better solutions.In conclusion, we show how embracing a patient-centred approach can address complex research challenges and improve how we study and manage MS and other conditions in the future.