Simon Stones

I am currently serving as Guest Editor for a special collection focused on strengthening the evidence base for meaningful patient involvement in research publications. Responsibilities include shaping the collection scope, inviting and assessing submissions, overseeing peer review in collaboration with the Editors-in-Chief, and ensuring high standards of ethics, transparency, equity, and inclusion. The collection prioritises submissions where patients (broadly defined, including caregivers)… Show more

I am currently serving as Guest Editor for a special collection focused on strengthening the evidence base for meaningful patient involvement in research publications. Responsibilities include shaping the collection scope, inviting and assessing submissions, overseeing peer review in collaboration with the Editors-in-Chief, and ensuring high standards of ethics, transparency, equity, and inclusion. The collection prioritises submissions where patients (broadly defined, including caregivers) contribute as research partners, investigators, and authors, and explores best practices for patient authorship, governance, dissemination, and power-sharing across the publication ecosystem. Show less

As Chair of the EULAR PARE Committee, I lead strategic efforts to inform, empower, and support national organizations representing over 120 million people living with rheumatic and musculoskeletal diseases (RMDs) across Europe and over 1.7 billion globally. I am responsible for implementing EULAR’s strategy with a strong focus on patient involvement, ensuring that the voice of people living with RMDs is embedded across EULAR’s scientific, educational, and advocacy work. I represent the PARE… Show more

As Chair of the EULAR PARE Committee, I lead strategic efforts to inform, empower, and support national organizations representing over 120 million people living with rheumatic and musculoskeletal diseases (RMDs) across Europe and over 1.7 billion globally. I am responsible for implementing EULAR’s strategy with a strong focus on patient involvement, ensuring that the voice of people living with RMDs is embedded across EULAR’s scientific, educational, and advocacy work. I represent the PARE community on the EULAR Council and Congress Committee, oversee the PARE Committee, its three sub-committees and 11 working groups, engage with study groups, and represent EULAR externally to strengthen the global impact and visibility of the patient voice in rheumatology. Show less

I am an ISMPP CMPP™ Mentor, responsible for offering small amounts of time to support candidates in their pursuit of the CMPP™ credential. CMPP™ mentors discuss the value of the industry’s only credential, provide guidance on certification exam preparation or navigating the recertification process, and assist candidates in efficiently using study resources.

I was the Chair-elect of the EULAR PARE Committee, responsible for informing, empowering, and supporting representatives of groups for more than 120 million people living with rheumatic and musculoskeletal diseases in Europe.

I was delighted to be one of 18 judges reviewing hundreds of nominations for The Shaw Trust Disability Power 100 2024. I specifically assessed and scored nominations in the 'Education and Research' and 'Best Small Employer' categories.

I was the leader-elect of the EULAR Patient Research Partner Working Group, prior to my election as Chair-elect of the EULAR PARE Committee. Collectively, we provide strategic direction on the involvement of patients in research, and support the delivery of training and support for patient research partners across Europe.

I am a panel member and reviewer for the Early Detection Grant. In this role, I have reviewed 8 expression of interest applications to date and have provided recommendations for the panel chair and co-chair to consider. Next steps include review of full applications, and applicant interviews.

I judged over 150 entries in the senior category of The Queen’s Commonwealth Essay Competition 2023, the world's oldest international schools' writing competition. I reviewed each entry against predefined marking criteria, including imagination, originality, concept development, theme, structure, and style.

I was a review editor for Frontiers in Public Health, focused on the public health education and promotion section. In this role, I regularly reviewed submissions, shared constructive feedback with authors, and provided decision recommendations to the associate editor.

I am a member of the ISMPP Patient Engagement Task Force (formerly the Advocacy and Outreach Committee). In this role, I have been involved in planning and implementing outreach initiatives with patient organisations, looking for synergies and opportunities for greater collaboration with ISMPP.

I was one of eight international 2020 cohort fellows for the Crohn's and Colitis Young Adult Network (CCYAN). The fellowship offered me the opportunity to learn from a variety of speakers, develop my illness narrative, and attend the Advances in Inflammatory Bowel Diseases (AIBD) conference.

I am a registered patient expert (representing the carer voice) with the European Organisation for Research and Treatment of Cancer (EORTC). EORTC is an independent, non-profit cancer research organisation, whose mission is to coordinate and conduct international translational and clinical research to improve the standard of treatment for people with cancer.

I am a patient expert with the Innovative Medicines Initiative (IMI). As part of this role, I am invited on an ad hoc basis to provide input on IMI’s scientific strategy, to participate in panels to review project proposals, to participate in reviews of ongoing and closed projects, to review the content of documents prepared for patients and the general public, and to participate in IMI events.

I was a member of PFMD's plain language summary working group. The aims of the working group were to develop 'how to' modules to facilitate the development and dissemination of plain language summaries of publications.

I am a trustee of RAiISE, a charitable incorporated organisation in the United Kingdom committed to transforming the experience for young people with invisible illnesses in education. As Secretary, I manage internal and external communications, and research-related queries.

I was a board member of the European Network for Children with Arthritis and Autoinflammatory Diseases (ENCA), a pan-European network led for and by parents and young people with rheumatic and musculoskeletal diseases (RMDs). As a board member, I helped to lead ENCA's research focus and communications.

I was the President of the European Network of Fibromyalgia Associations (ENFA), elected in May 2019 after twelve months as a Board Member. As President, I lead an international management team responsible for twenty-one member patient organisations across Europe and the Middle East. During my tenure, I focused on improving the organisation's governance structure, as well as organising and reporting on two annual conferences and general assemblies.

I was a mentor for the EULAR/EMEUNET Ambassador Programme 2018 and 2019, the aim of which is to connect first time attendees of the EULAR Annual European Congress of Rheumatology with young mentors, who are annual meeting veterans and can make the process of attending a large rheumatology meeting easier. As a mentor each year, I worked with a group of rheumatology clinicians and researchers before, and during the congress, to enable them to fully participate in the congress.

I was appointed an Associate Fellow of The Royal Commonwealth Society, which is granted to those who have demonstrated a sustained commitment to promoting the values of the Commonwealth, as well as to those working to improve the lives of Commonwealth citizens. The Associate Fellowship of The Royal Commonwealth Society offers young people from across the Commonwealth the opportunity to become part of an ever-growing network, offering opportunities, resources and a platform for discussion.

I am a firm believer that partnering with patients and care partners is the way to transform healthcare. As a Savvy Cooperative co-owner, I am proud to be a part of a co-op that champions inclusivity, elevates patients insights, and ensures patients are fairly compensated for their contributions, time, and expertise. I am proud to be the co-owner of a co-op that is also a public benefit company, committed to social good.

I am a Patient Leader Network Member of WEGO Health Experts, the first digital matching platform that connects healthcare organisations with patient experts on demand. As a health expert, I offer my skills and experiences on a consultancy basis to individuals wishing to understand the patient perspective of living with chronic conditions. I also bring my expertise of the research landscape, particularly around effectively involving people in research, working with young people, and conducting… Show more

I am a Patient Leader Network Member of WEGO Health Experts, the first digital matching platform that connects healthcare organisations with patient experts on demand. As a health expert, I offer my skills and experiences on a consultancy basis to individuals wishing to understand the patient perspective of living with chronic conditions. I also bring my expertise of the research landscape, particularly around effectively involving people in research, working with young people, and conducting qualitative research. In 2017, I was awarded the inaugural 'Healthcare Collaborator: Patient' award, in recognition of my work as a patient leader in bridging the gap between patients, academia and industry. Show less

I am an alumni ambassador and mentor for The University of Manchester, my alma mater. Through The Manchester Network, I have mentored recent graduates and current students with an interest in life and human sciences. As an alumni ambassador, I have attended various 'Meet the Professionals' events within the Faculty of Biology, Medicine and Health, which involves speaking with current students in the life sciences about my experiences and journey.

I was a member of the external advisory board for the International Children's Advisory Network (iCAN), which continually seeks to improve the quality of services and optimise efforts to support the most pressing research needs for young people around the world. To better serve the medical, scientific and patient communities, the external advisory board identified possible avenues of collaboration, reviewed network-wide projects, and offered advice to maximise iCAN's efforts globally. The… Show more

I was a member of the external advisory board for the International Children's Advisory Network (iCAN), which continually seeks to improve the quality of services and optimise efforts to support the most pressing research needs for young people around the world. To better serve the medical, scientific and patient communities, the external advisory board identified possible avenues of collaboration, reviewed network-wide projects, and offered advice to maximise iCAN's efforts globally. The external advisory board met quarterly via teleconference and helped steer iCAN towards making a meaningful impact on paediatric health, medicine, research, and innovation. Show less

I have been a UK reviewer of entries for the EULAR Edgar Stene Prize since 2016, the year that I won the award. This involves reviewing entries sent to the Arthritis and Musculoskeletal Alliance (ARMA), to then select the one winning entry from the UK to be entered with the other country-level winning essays to be judged by EULAR for receipt of the Edgar Stene Prize, which is awarded during the EULAR Annual European Congress of Rheumatology in June.

I was a trustee of Fibromyalgia Action UK, a registered charity in the United Kingdom which provides information and support to individuals and families living with fibromyalgia, in addition to a national helpline. The charity also provides medical information for health and education professionals. As well as the designated liaison with the European umbrella organisation, I was the research liaison at the charity, responsible for interacting with researchers. I also contributed to driving the… Show more

I was a trustee of Fibromyalgia Action UK, a registered charity in the United Kingdom which provides information and support to individuals and families living with fibromyalgia, in addition to a national helpline. The charity also provides medical information for health and education professionals. As well as the designated liaison with the European umbrella organisation, I was the research liaison at the charity, responsible for interacting with researchers. I also contributed to driving the communications strategy for the organisation. Show less

The National Centre of Excellence for Musculoskeletal Health and Work was a multidisciplinary collaboration funded by Versus Arthritis and the Medical Research Council. The overarching aim of the centre was to identify cost-effective ways to minimise the substantial adverse impacts of musculoskeletal disorders in the workplace. I advocated for people living with musculoskeletal diseases through the centre as a lay member of the stakeholder working group.

I was a guest blogger on The Huffington Post's website, tackling the misconception that arthritis is an old person's disease. The article formed part of the 2016 World Arthritis Day campaign, 'It's in your hands, take action'.

I advise on the relevance of research to Versus Arthritis' remit and goals, by evaluating the potential benefit to stakeholders, commenting on funding priorities, and raising issues of feasibility and appropriateness for patients and their families. To date, I have been involved in the reviews of four funding calls, including the health services research award, the medical technologies proof of concept award, the pain challenge, and the stacking the odds towards a cure challenge. In addition, I… Show more

I advise on the relevance of research to Versus Arthritis' remit and goals, by evaluating the potential benefit to stakeholders, commenting on funding priorities, and raising issues of feasibility and appropriateness for patients and their families. To date, I have been involved in the reviews of four funding calls, including the health services research award, the medical technologies proof of concept award, the pain challenge, and the stacking the odds towards a cure challenge. In addition, I have also delivered patient and public involvement training workshops to researchers and healthcare professionals on behalf of Versus Arthritis (formerly Arthritis Research UK). Show less

I am a guest speaker on the BSc Child Nursing undergraduate module HECS 2186, Young People's Development and Health. As part of this session, I help to develop students' knowledge and application of transitional care within the context of adolescent growth and development. In addition, I discuss the importance of self-management of chronic conditions by young people and their families, in addition to supporting students in engaging, informing and involving young people and their families in… Show more

I am a guest speaker on the BSc Child Nursing undergraduate module HECS 2186, Young People's Development and Health. As part of this session, I help to develop students' knowledge and application of transitional care within the context of adolescent growth and development. In addition, I discuss the importance of self-management of chronic conditions by young people and their families, in addition to supporting students in engaging, informing and involving young people and their families in research. Show less

I joined the Patient Research Ambassador initiative to help engage more people in research. Initially, I contributed to the development of an effective communications plan, by influencing the new website, newsletters, leaflets, posters, and social media campaigns. In addition, I was involved in updating guidance documents, and promoting the initiative within research communities across the United Kingdom. After stepping away from the operational and virtual lay group, I remain an active patient… Show more

I joined the Patient Research Ambassador initiative to help engage more people in research. Initially, I contributed to the development of an effective communications plan, by influencing the new website, newsletters, leaflets, posters, and social media campaigns. In addition, I was involved in updating guidance documents, and promoting the initiative within research communities across the United Kingdom. After stepping away from the operational and virtual lay group, I remain an active patient research ambassador on a local level (through the North West Coast and Greater Manchester), as well as a national level (through the Clinical Research Network) and organisational level (through the Experimental Arthritis Treatment Centre for Children at Alder Hey Children's Hospital NHS Foundation Trust/University of Liverpool). Show less

I am a peer reviewer for the Journal of Medical Internet Research (JMIR), Interactive Journal of Medical Research, JMIR MHealth and UHealth, JMIR Rehabilitation and Assistive Technologies, JMIR Research Protocols and JMIR Pediatrics and Parenting. I focus on the application of eHealth, mHealth, and self-management interventions for children and young people with long-term health conditions and their families. I provide written, unbiased feedback in a timely manner, by critiquing the value of… Show more

I am a peer reviewer for the Journal of Medical Internet Research (JMIR), Interactive Journal of Medical Research, JMIR MHealth and UHealth, JMIR Rehabilitation and Assistive Technologies, JMIR Research Protocols and JMIR Pediatrics and Parenting. I focus on the application of eHealth, mHealth, and self-management interventions for children and young people with long-term health conditions and their families. I provide written, unbiased feedback in a timely manner, by critiquing the value of submitted manuscripts, in terms of clarity, accuracy, originality and relevance. Show less

I am responsible for reviewing European scientific research projects and regulatory guidance documents, as a lay representative on behalf of the European League Against Rheumatism. I also advise researchers on an international level about how to ensure that their research is co-designed with patients and their families, and how to write information in lay language.

As part of the EULAR Annual European Conference of People with Arthritis/Rheumatism in Europe (PARE) Task Force, I was responsible for planning and overseeing the delivery two youth-focused workshops at the EULAR Annual European Conference of PARE, between 2016 and 2018. This role involves collaboration with various stakeholders across Europe, to arrange workshops for approximately 120 delegates each year.

As a member of the study advisory panel and young person's advisory panel for the 'experiences of primary care services' module, I embedded the patient voice into this joint project with The University of Oxford. This has involved reviewing existing healthtalk.org modules, proposing a new sitemap, and identifying important patient-reported themes to include in this module.

I was involved in stimulating the international exchange of youth programmes and activities for young people with rheumatic and musculoskeletal diseases across Europe, as a founding member of the EULAR Young PARE working group. As part of this role, I co-ordinated the planning of two annual youth-focused workshops at the EULAR Annual European Conference of People with Arthritis/Rheumatism in Europe (PARE) between 2015 and 2018. In addition, I also co-chaired the Digital Communications Committee… Show more

I was involved in stimulating the international exchange of youth programmes and activities for young people with rheumatic and musculoskeletal diseases across Europe, as a founding member of the EULAR Young PARE working group. As part of this role, I co-ordinated the planning of two annual youth-focused workshops at the EULAR Annual European Conference of People with Arthritis/Rheumatism in Europe (PARE) between 2015 and 2018. In addition, I also co-chaired the Digital Communications Committee and Visibility and Global Affairs Committee for EULAR Young PARE. Show less

In this role, I review research proposals, commissioning and regulatory documents for the National Institute for Health Research's Central Commissioning Facility, Evaluation, Trials and Studies Co-ordinating Centre, and Centre for Engagement and Dissemination. In particular, I advise on research in the field of paediatrics, rheumatology, self-management, mHealth and eHealth interventions, scrutinising the quality of submitted documents for funding and publication.

I was an &Us Member of the Royal College of Paediatrics and Child Health (RCPCH), the voice of children young people and families in paediatric clinical research, care and service development in the United Kingdom.

I am a peer lay reviewer for BioMed Central's Research Involvement and Engagement journal. This involves critiquing submissions, ensuring that they are suitable for inclusion, are appropriate for the journal's target audience, highlighting relevant ways in which patients and the public have been involved in research.

I was an advisor for the MAximising Therapeutic Utility in Rheumatoid Arthritis (MATURA) stratified medicine consortium, co-funded by the Medical Research Council (MRC) and Versus Arthritis. This study aimed to enable early, effective treatment for people in the United Kingdom who suffer from rheumatoid arthritis. I was involved in producing materials for the general public, including describing the consortium and its portfolio for lay audiences.

I am a contributor to the Cochrane UK Students 4 Best Evidence (S4BE) website, where I write about evidence-based health care, qualitative research, and patient and public involvement initiatives.

As a patient reviewer, I am responsible for peer reviewing research and educational papers, in my fields of expertise, which are patient and public involvement, paediatrics, rheumatology, mHealth and eHealth.

I screen citations using a web-based tool, to identify randomised controlled trials (RCTs) and quasi-RCTs to be included in the Excerpta Medica Database (EMBASE). Selected studies feed into the Cochrane Central Register of Controlled Trials.

As a STEM ambassador, I hope to inspire young people to consider a career in science by sharing my journey at local events and networking sessions. In this role, I have presented at a number schools, colleges, and higher education institutes about health sciences and the pharmaceutical industry. I am also keen to promote careers in science and medical communications.

I was a guest writer for the Bollington Scarecrow Science Festival, in which I produced resources about a local orthopaedic surgeon, Sir John Charnley FRS, who pioneered the first total hip replacement in the 1960s. The aim of these resources were to engage and inspire members of the public about the history of science and medicine.

I administered the Facebook group for 2014 entrants to the Faculty of Life Sciences at The University of Manchester, as a Biomedical Sciences student representative. This involved responding to queries from prospective students, sharing information about life at the university, and informing them of ongoing activities.

I was one of six Social Media Champions for National Arthritis Week, advocating for people living with rheumatic and musculoskeletal diseases. This involved interacting with a variety of individuals, organisations and charities via social media, helping to raise awareness of these conditions amongst the general public.

I am a virtual member of The University of Manchester's Centre for Musculoskeletal Research user group, assisting with all aspects of clinical and scientific research, in terms of its appropriateness for people living with musculoskeletal diseases and their families.

I helped to ensure that patient and public involvement in research was embedded into primary healthcare research via the NIHR School for Primary Care Research engagement group, PRIMER. This involved collaboration with patients, members of the public and researchers in the prioritisation, design, execution and evaluation of research projects.

As a PASS leader, I supported first year students to develop their academic and personal skills, through a variety of sessions to facilitate and consolidate learning. Sessions were voluntary and regularly timetabled, enabling students to informally review material from their theoretical and practical course units. In addition, weekly sessions were planned and delivered with a co-leader.

I published two articles as part of the core concepts theme, describing the pathophysiology of musculoskeletal diseases, the latest discoveries in this area, and implications for health and social care delivery and patients.

I was co-founder of a novel resource for the Greater Manchester Local Record Centre's 'From Grey to Green' project, funded by the National Lottery Heritage Fund. I supported engagement activities, by improving public understanding of biological sciences. The blog was awarded 1st prize in the life sciences community project scheme at The University of Manchester.

I was a consumer representative and advocate for young people with rheumatic and musculoskeletal diseases in the United Kingdom on the NIHR CRN: Children/Versus Arthritis Paediatric Rheumatology Clinical Studies Group. As part of this role, I was responsible for addressing research priorities under the remit of Versus Arthritis and the National Institute for Health Research's Clinical Research Network portfolio, ensuring that studies on medicines for young people with rheumatic and… Show more

I was a consumer representative and advocate for young people with rheumatic and musculoskeletal diseases in the United Kingdom on the NIHR CRN: Children/Versus Arthritis Paediatric Rheumatology Clinical Studies Group. As part of this role, I was responsible for addressing research priorities under the remit of Versus Arthritis and the National Institute for Health Research's Clinical Research Network portfolio, ensuring that studies on medicines for young people with rheumatic and musculoskeletal diseases were developed and carried out to best meet the needs of young people and their families. Show less

In this voluntary role, I lead HCPT Manchester Region's marketing strategy, in response to the charity's local, national and international strategic objectives. I managed the charity's website development and content, social media, email marketing, desktop publishing, research, and reporting.

I was a volunteer helper and carer with HCPT, a national charity of volunteers providing annual life-changing holidays for children and young people with social, emotional, and physical needs.

As a student ambassador at Runshaw College, I supported the student liaison team with student enrolment and college open evenings, for prospective further education students and their families.