Simon Stones

Publications

• How the COVID-19 pandemic has affected rheumatology research
• EULAR points to consider for the use of big data in rheumatic and musculoskeletal diseases
• EULAR Points to Consider for the Development, Evaluation and Implementation of Mobile Health Applications for Self-management in Patients with Rheumatic and Musculoskeletal Diseases
• Is the patient voice being heard in peer-reviewed medical publications?
• FACTORS FACILITATING THE SELF- AND SHARED-MANAGEMENT OF JIA BY CHILDREN, YOUNG PEOPLE, THEIR FAMILIES, AND PROFESSIONALS INVOLVED IN THEIR CARE: A REALIST EVALUATION
• IDENTIFYING THE PRIMARY OUTCOME MEASURE AND PROTOCOL COMPONENTS FOR A PROSPECTIVE FEASIBILITY STUDY OF CORTICOSTEROID REGIMENS FOR CHILDREN AND YOUNG PEOPLE WITH JUVENILE IDIOPATHIC ARTHRITIS USING CONSENSUS METHODS WITH YOUNG PEOPLE, FAMILIES AND PROFESSIONALS
• FACTORS FACILITATING THE SELF- AND SHARED-MANAGEMENT OF JUVENILE IDIOPATHIC ARTHRITIS
• A NATIONAL SURVEY OF CLINICAL PRACTICE OF CORTICOSTEROID USE IN NEWLY DIAGNOSED OR FLARING CASES OF JUVENILE IDIOPATHIC ARTHRITIS ACROSS THE UK
• How to involve children and young people in what is, after all, their research
• A national survey of clinical practice of corticosteroid use in newly diagnosed or flaring cases of juvenile idiopathic arthritis across the UK
• SELF- AND SHARED-MANAGEMENT INTERVENTIONS FOR CHILDREN,YOUNG PEOPLE, AND FAMILIES LIVING WITH RHEUMATIC AND MUSCULOSKELETAL DISEASES: AN INTEGRATIVE REVIEW
• #ARTHRITISATWORK: USING TWITTER TO ENGAGE THE INTERNATIONAL ARTHRITIS COMMUNITY
• REFRESHING THE SOCIAL MEDIA STRATEGY OF FIBROMYALGIA ACTION UK: RESULTS OF A NATIONAL PATIENT ORGANISATION SURVEY
• CANNABIS-BASED PRODUCTS FOR MEDICINAL USE: EXPLORING THE VIEWS AND EXPERIENCES OF PEOPLE WITH FIBROMYALGIA
• Are plain language summaries of health economic publications needed for patients and non-expert audiences?
• How to navigate the ethical review of research
• Analysing and reporting of observational data: a systematic review informing the EULAR points to consider when analysing and reporting comparative effectiveness research with observational data in rheumatology
• WORLD YOUNG RHEUMATIC DISEASES (WORD) DAY: THE FIRST INTERNATIONAL AWARENESS DAY FOR PAEDIATRIC RHEUMATIC DISEASES
• "WHEN YOU READ THIS, YOU REALLY FEEL OLD!" PERSPECTIVES OF YOUNG PEOPLE WITH INFLAMMATORY ARTHRITIS ON PATIENT REPORTED OUTCOME MEASURES FROM A EUROPEAN QUALITATIVE STUDY
• PEOPLE WITH RHEUMATIC AND MUSCULOSKELETAL DISEASES CONNECT AND LEARN ABOUT HEALTH-RELATED ISSUES USING SOCIAL MEDIA
• POINTS TO CONSIDER WHEN ANALYSING AND REPORTING COMPARATIVE EFFECTIVENESS RESEARCH WITH OBSERVATIONAL DATA IN RHEUMATOLOGY
• "When You Read This, You Really Feel Old!" Perspectives of Young People with Inflammatory Arthritis on Patient Reported Outcome Measures from a European Qualitative Study
• Bringing scientific congresses to patients and healthcare professionals (HCPs) through plain language podcasts: a case study
• EXPLORING DIFFERENCES IN THE AGE ON ONSET OF JIA BETWEEN MALES AND FEMALES: A PARENT-LED SURVEY
• Developing plain language summaries of scientific congress abstracts - with patients, for patients: a feasibility study
• A SYSTEMATIC REVIEW TO INFORM THE EULAR POINTS TO CONSIDER WHEN ANALYSING AND REPORTING COMPARATIVE EFFECTIVENESS RESEARCH WITH OBSERVATIONAL DATA IN RHEUMATOLOGY
• SUMMARY OF PATIENT/PARENT ORGANISATION SERVICES PROMOTING SELF- AND SHARED-MANAGEMENT OF JIA IN THE UK AND IRELAND
• Defining a process for developing and disseminating abstract plain language summaries for scientific congresses: a case study
• Developing plain language summaries of scientific congress abstracts-with patients, for patients: an expanded feasibility study
• THE SELF- AND SHARED-MANAGEMENT OF JIA: A NEW FRAMEWORK FOR RESEARCH, POLICY, AND PRACTICE
• EULAR points to consider when analysing and reporting comparative effectiveness research using observational data in rheumatology
• THE SELF- AND SHARED-MANAGEMENT OF PAEDIATRIC-ONSET RHEUMATIC AND MUSCULOSKELETAL DISEASES BY CHILDREN, YOUNG PEOPLE AND THEIR FAMILIES: INITIAL FINDINGS FROM A THEORY-GLEANING PROCESS WITH PATIENT ORGANISATION REPRESENTATIVES
• EULAR points to consider for including the perspective of young patients with inflammatory arthritis into patient-reported outcomes measures
• CO-DESIGNING A COMPARATIVE RANDOMISED CONTROLLED CLINICAL TRIAL OF CORTICOSTEROID REGIMENS WITH CHILDREN, YOUNG PEOPLE AND PARENTS LIVING WITH JUVENILE IDIOPATHIC ARTHRITIS
• EULAR POINTS TO CONSIDER FOR THE DEVELOPMENT, EVALUATION AND IMPLEMENTATION OF MOBILE HEALTH APPLICATIONS FOR SELF-MANAGEMENT IN PATIENTS WITH RHEUMATIC AND MUSCULOSKELETAL DISEASES
• Making research central to good paediatric practice
• EULAR points to consider for therapeutic drug monitoring of biopharmaceuticals in inflammatory rheumatic and musculoskeletal diseases
• 2019 EULAR points to consider for the assessment of competences in rheumatology specialty training
• Co-designing a comparative randomised controlled clinical trial of corticosteroid regimens with children, young people and parents living with juvenile idiopathic arthritis
• Establishing an international awareness day for paediatric rheumatic diseases: reflections from the inaugural World Young Rheumatic Diseases (WORD) Day 2019
• Young people's perspectives on patient-reported outcome measures in inflammatory arthritis: results of a multicentre European qualitative study from a EULAR task force
• LOOKING FOR A NEEDLE IN A HAYSTACK: HELPING YOUNG PEOPLE TO MAKE SENSE OF EVIDENCE BASED HEALTH CARE
• Current status of use of big data and artificial intelligence in RMDs: a systematic literature review informing EULAR recommendations
• EULAR points to consider for the development, evaluation and implementation of mobile health applications aiding self-management in people living with rheumatic and musculoskeletal diseases
• Identifying the primary outcome measure and protocol components for a prospective feasibility study of corticosteroid regimens for CYP with JIA using consensus methods with young people, families and professionals
• THE SELF- AND SHARED-MANAGEMENT OF JUVENILE IDIOPATHIC ARTHRITIS BY CHILDREN, YOUNG PEOPLE, FAMILIES AND PROFESSIONALS INVOLVED IN THEIR HEALTHCARE AND EDUCATION: REFLECTIONS FROM A PATIENT-LED, REALIST EVALUATION
• Endorsement of the OMERACT core domain set for shared decision making interventions in rheumatology trials: Results from a multi-stepped consensus-building approach
• Children and young people's concerns and needs relating to their use of health technology to self-manage long-term conditions: a scoping review
• Framework to help design and review research involving children
• Different corticosteroid induction regimens in children and young people with juvenile idiopathic arthritis: the SIRJIA mixed-methods feasibility study
• THU0743-HPR Supported self-management interventions for families and children aged 4 to 11 years old living with arthritis, asthma and type one diabetes: an integrative review
• Nothing about us without us: The importance of involving young people in healthcare research, from the bench to the bedside
• OP0011-PARE A week to tweet: findings from young pare’s online course for twitter novices
• The essential role of consumers in clinical and health services research: best practice examples from the paediatric rheumatology clinical studies group consumer representatives
• The critical role of patients, parents and carers in guiding the paediatric rheumatology research strategy for the United Kingdom through the clinical studies group
• Introducing RAiISE – Raising awareness of invisible illnesses in schools and education
• Your voice, your story, your life: You matter
• Breaking barriers, embracing expertise: When patients become people in research
• The development and evaluation of an interactive health communication application to promote self-management in young people diagnosed with juvenile idiopathic arthritis: a pilot study
• RAiISE: Raising awareness of invisible illnesses in schools and education
• Self-management of chronic disease in childhood: the iSMART study
• Social media supremacy: a force of change paving the way for the next generation of healthcare and research.
• Self- and shared-management interventions for children of primary school age (4 to 11 years old) with chronic conditions and their families: a review of the literature
• Pain is real, but so is hope
• Left to cope in the dark: The realities of being young with arthritis
• Patient peer review for the Research Involvement and Engagement journal
• Nothing about us without us: The importance of involving young people in healthcare research, from the bench to the bedside
• Making the dream a reality: the evolving landscape of family-focused research inspired by empowered patients and their families
• Identifying the self-management needs of children with rheumatic and musculoskeletal diseases and their families: an exploratory sequential mixed methods study proposal
• Developing a mobile-app to aid young people’s self-management of chronic rheumatic disease: a qualitative study
• Developing, evaluation and implementing smartphone applications for young people living with rheumatic and musculoskeletal diseases: a scoping review of empirical research
• Empowering young people and families to contribute to paediatric clinical research via the European YPAG network (eYPAGnet)
• Young people improving research across England
• Families’ views on the feasibility of a corticosteroid trial in JIA: a qualitative study
• Tell me and I forget, teach me and I remember, involve me and I learn
• Social media and the path to empowerment: We’ve got the power!
• All is not as it seems: Unravelling the complexity of chronic conditions in children, young people and their families
• Introducing Consulting at McCann Health
• Co-creating customised and reliable, home-based digital condition-management apps: a qualitative study involving children with long-term conditions
• Ensuring research really does involve the young person
• Healthcare 2.0: Social media in healthcare
• The creaking epidemic
• Co-design, Co-produce, Co-deliver: Collaboration is the only viable path to success
• What is really bothering my patient?
• Research – The best treatment I’ve ever had
• Paving the way for a brighter future: Opportunities to involve young people in healthcare research across Greater Manchester
• Social media and the path to health empowerment
• 21st EULAR Annual European Conference of PARE Report
• Involving patients, parents and carers in paediatric rheumatology research: best practice examples from lay representatives of the United Kingdom’s clinical studies group
• Young people get arthritis too
• In the driving seat: Health care and research led for, and by young people
• 8766 days to change a life
• The Current State of Big Data Use and Artificial Intelligence in RMDs: A Systematic Literature Review Informing EULAR Recommendations
• The Impact of Fibromyalgia in Spondyloarthritis: From Classification Criteria to Outcome Measures
• WORKING TOGETHER FOR CHILDREN AND FAMILIES LIVING WITH RHEUMATIC AND MUSCULOSKELETAL DISEASES: THE EUROPEAN NETWORK FOR CHILDREN WITH ARTHRITIS (ENCA)
• Social Media Use for Health-Related Purposes By People with Rheumatic and Musculoskeletal Diseases - Results of a Global Survey
• User testing digital, multimedia information to inform children, adolescents and their parents about healthcare trials
• Protective parents and permissive children: what qualitative interviews with parents and children can tell us about the feasibility of juvenile idiopathic arthritis trials
• Young People’s, Parents’, and Professionals’ Views on Required Components of Mobile Apps to Support Self-Management of Juvenile Arthritis: Qualitative Study
• Young People�s, Parents�, and Professionals� Views on Required Components of Mobile Apps to Support Self-Management of Juvenile Arthritis: Qualitative Study (Preprint)
• Family perspectives on the feasibility of a corticosteroid induction regimen randomised controlled trial in juvenile idiopathic arthritis: results of a qualitative study
• DEVELOPING A MOBILE-APP TO AID YOUNG PEOPLE'S SELF-MANAGEMENT OF CHRONIC RHEUMATIC DISEASE: A QUALITATIVE STUDY
• IDENTIFYING THE SELF-MANAGEMENT NEEDS OF CHILDREN WITH RHEUMATIC AND MUSCULOSKELETAL DISEASES AND THEIR FAMILIES: AN EXPLORATORY SEQUENTIAL MIXED METHODS STUDY PROPOSAL
• THE ESSENTIAL ROLE OF CONSUMERS IN CLINICAL AND HEALTH SERVICES RESEARCH: BEST PRACTICE EXAMPLES FROM THE PAEDIATRIC RHEUMATOLOGY CLINICAL STUDIES GROUP CONSUMER REPRESENTATIVES
• Patient and public involvement in research - views of young people
• Introducing iSMART: Innovative approaches to self-management in children with long-term conditions and their families
• Juvenile idiopathic arthritis: it's not just an old person's disease
• Shared experience of consumer involvement on a clinical studies group
• Using social media to deliver effective and engaging interactions
• Arthritis: it's not just an old person's disease
• Web review: Arthur’s Place
• 2nd EULAR Young PARE Conference, ‘Change the Future’ Report
• 19th EULAR Annual European Conference of PARE Report
• Clinical studies groups: a toolkit for patient, parent and carer representatives
• The social media revolution: strategies to create and strengthen communication in a digital era
• Self-management interventions for children aged four to 11 living with long-term, chronic conditions and their families: a realist synthesis protocol
• Collaboration is the key to success
• The development of a toolkit for patient, parent and carer representatives involved in shaping clinical and health services research
• Shared experience of sitting on a clinical studies group (CSG) as a patient advocate
• Changing the way children, adolescents and their families are informed about clinical research through novel multimedia information resources
• Family-focused care across the life course
• Arthritis is for old people, right?
• Web review: Your Rheum
• An exploration of lived experiences amongst adults with rheumatoid arthritis using an online research community platform: a pilot study
• Your Rheum – Giving young people a voice in rheumatology research
• Growing stronger together: implementing EULAR Young PARE’s strategy
• EULAR Young PARE: The voice of young people with rheumatic diseases across Europe
• How innovative technologies can support individuals to better self-manage their conditions
• A heavy weight for small hands
• Young PARE “Change the Future” conference
• Patients promoting and raising awareness of health research
• A life without arthritis wouldn’t be my life; Living with a rheumatic or musculoskeletal disease – How I take action to enjoy life to the full
• Technology to help your arthritis
• Making research everyone’s business
• Top tips for studying with arthritis
• So many things; so little time!
• Seeing the GP: Advice and tips for young people
• The importance of face-to-face networks: findings from the 2nd EULAR Young PARE conference, ‘Change the future’
• Family perspectives on the feasibility of a corticosteroid induction regimen randomised controlled trial in juvenile idiopathic arthritis: results of a qualitative study
• Patients as partners – transforming the delivery of clinical research in the NHS
• The patient will see you now: a new era of empowered people living with health conditions
• Self management of fibromyalgia from a patient perspective
• When personal and professional experiences intersect: the path to success
• Exciting things happen when involving young people to promote better research for better healthcare
• Stepping stones
• Fica rme, orgulhoso e lembra-te, tu nunca estás sozinho! / Stand tall, stand proud and remember, you are never alone!
• The development and evaluation of an interactive health communication application to educate and empower young people living with juvenile idiopathic arthritis: a pilot study
• Beneath the surface: unravelling the complexity of long-term, chronic conditions
• 20th EULAR Annual European Conference of PARE Report
• EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases
• Involvement of children and young people with long-term conditions in the development of mobile app technology to promote disease self-management
• The top concerns of children and young people living with JIA
• Developing mobile applications for and with young people with long-term conditions learning to share their health-care with professionals: A young person and family-led approach
• Nurses and patients as co-researchers: dream or reality?
• Health theory in mobile technology apps supporting young people’s long-term condition/s management: a systematic review
• Apps and Adolescents: A Systematic Review of Adolescents’ Use of Mobile Phone and Tablet Apps That Support Personal Management of Their Chronic or Long-Term Physical Conditions
• Health professionals and patients as co-researchers: dream or reality?
• Exciting things happen when involving young people to promote better research for better healthcare
• Fostering a Manchester-based, interdisciplinary research programme on mobile technologies for young people with long-term conditions to promote optimum disease management.
• NIHR CRN: Children/Arthritis Research UK paediatric rheumatology clinical studies group clinical research strategy
• Paediatric rheumatology CSG progress report 1st April 2014 – 31st March 2015
• Zivot s reumatickym ochorenim: „Ako zijem svoj zivot naplno“
• Come godersi la vita sino in fondo: la storia di Simon
• Das leben voll auskosten
• Patients in research: delivering person-centric care
• The development and evaluation of an interactive health communication application to promote self-management in young people diagnosed with juvenile idiopathic arthritis: a pilot study
• Patient authorship of medical research publications: An evolution, revolution, and solution?