Simon R Stones

Simon R Stones
Envision Pharma Group · Engage Scientific Solutions

BSc (Hons) PhD

About

184
Publications
29,753
Reads
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673
Citations
Introduction
Simon is a Medical Writer at Envision Pharma Group, as well as a Multi-Award Winning Health Advocate. He has an academic background in Biomedical Sciences and Applied Health Research. He was recognised in 2019 and 2020 as one of the top 100 most influential people with health conditions in the United Kingdom, and is regarded as an international patient leader in rheumatology and patient engagement/involvement.
Additional affiliations
February 2021 - October 2021
Envision Pharma Group
Position
  • Associate Medical Writer
October 2016 - January 2021
University of Leeds
Position
  • PhD Student
August 2014 - July 2015
McCann Complete Medical
Position
  • Research Associate
Description
  • Simon has worked with Double Helix to deliver brand and value strategy for pharmaceuticals, biotechnology, diagnostics and devices, working across pricing, market access, health economics, and outcomes research.
Education
October 2016 - June 2021
University of Leeds
Field of study
  • Healthcare
September 2012 - June 2016
The University of Manchester
Field of study
  • Biomedical Sciences with Industrial/Professional Experience

Publications

Publications (184)
Article
Full-text available
Background: The prevalence of physical chronic or long-term conditions in adolescents aged 10-24 years is rising. Mobile phone and tablet mobile technologies featuring software program apps are widely used by these adolescents and their healthy peers for social networking or gaming. Apps are also used in health care to support personal condition ma...
Article
To develop standards and recommendations for transitional care for young people (YP) with juvenile-onset rheumatic and musculoskeletal diseases (jRMD). The consensus process involved the following: (1) establishing an international expert panel to include patients and representatives from multidisciplinary teams in adult and paediatric rheumatology...
Article
Full-text available
Background Mobile health applications (apps) are available to enable people with rheumatic and musculoskeletal diseases (RMDs) to better self-manage their health. However, guidance on the development and evaluation of such apps is lacking. Objectives The objective of this EULAR task force was to establish points to consider (PtC) for the developme...
Article
Full-text available
Background In the UK, juvenile idiopathic arthritis is the most common inflammatory disorder in childhood, affecting 10 : 100,000 children and young people aged < 16 years each year, with a population prevalence of around 1 : 1000. Corticosteroids are commonly used to treat juvenile idiopathic arthritis; however, there is currently a lack of consen...
Article
Full-text available
Background Tremendous opportunities for health research have been unlocked by the recent expansion of big data and artificial intelligence. However, this is an emergent area where recommendations for optimal use and implementation are needed. The objective of these European League Against Rheumatism (EULAR) points to consider is to guide the collec...
Presentation
Full-text available
This presentation was delivered at the Leeds Children's Hospital Research Forum. This presentation presented the JIA self- and shared-management framework, with a focus on implications and recommendations for research, policy, and practice.
Presentation
Full-text available
This presentation was delivered as part of the health professionals in rheumatology oral abstract session: from prevention to management, at the 23rd EULAR Annual European Congress of Rheumatology. This presentation presented a new framework to promote self- and shared-management of JIA by children and young people, their families, professionals in...
Presentation
Full-text available
This presentation was delivered as part of the 'Social Media and Digital Sources in Rheumatology', at the 23rd EULAR Annual European Congress of Rheumatology. This presentation focused on engaging patients, caregivers, and the wider public on social media, with practical support for healthcare professionals wishing to become more active online.
Presentation
Full-text available
This presentation was delivered as part of the 'Early Career Researcher Platform' webinar, hosted by the International Family Nursing Association (IFNA) - UK and Ireland Chapter.
Article
Background Juvenile idiopathic arthritis (JIA) is a complex long-term condition requiring lifelong management [1]. Children and young people (CYP) should be empowered to self-manage their health and wellbeing (H&W) from diagnosis [2], while families should be supported in their shared-management role [3]. Self- and shared-management (SSM) intervent...
Presentation
Full-text available
This presentation was delivered as part of the EULAR Young PARE Webinar, titled 'Coping with a diagnosis – Accepting your diagnosis can make you stronger'.
Article
Objective: To develop EULAR points-to-consider for therapeutic drug monitoring (TDM) of biopharmaceuticals in inflammatory rheumatic and musculoskeletal diseases (RMDs). Methods: The points-to-consider were developed in accordance with EULAR standardised operation procedures by a multidisciplinary task force from eight European countries, based...
Poster
Full-text available
This poster was delivered online and via interactive screen at the 18th Annual Meeting of ISMPP. The poster summarised a case study of a peer-reviewed, citable, plain language podcast, which was hosted by a patient advocate and healthcare professional.
Presentation
Full-text available
This presentation was delivered as part of the 'Looking ahead to the next decade' session, at the Academy of Medical Sciences and Health Research Authority joint workshop titled 'The HRA at ten: progress to date and future gazing'.
Article
Background Comparing treatment effectiveness over time in observational settings is hampered by several major threats, among them confounding and attrition bias. Objectives To develop European Alliance of Associations for Rheumatology (EULAR) points to consider (PtC) when analysing and reporting comparative effectiveness research using observation...
Article
Full-text available
The COVID-19 pandemic has put pressure on researchers around the world. In this Viewpoint, six rheumatology researchers at different career stages and from different regions discuss the difficulty of conducting research during the pandemic, and also reflect on how the pandemic has changed their attitudes towards research and their plans for the fut...
Article
Background Juvenile idiopathic arthritis (JIA) requires some form of lifelong management, with at least one third of children symptomatic in adulthood. Therefore, empowering children to competently self-manage their health and wellbeing across the lifecourse is logical, while supporting families in their shared-management role during childhood. How...
Article
Full-text available
Objectives To evaluate the analysis and reporting of comparative effectiveness research with observational data in rheumatology, informing European Alliance of Associations for Rheumatology points to consider. Methods We performed a systematic literature review searching Ovid MEDLINE for original articles comparing drug effectiveness in longitudin...
Presentation
Full-text available
Delivered as part of Digital Health Technologies session at the 27th European Paediatric Rheumatology Congress (PReS), this presentation provided a brief overview of online resources for patients living with paediatric rheumatic diseases and their families.
Presentation
Full-text available
Delivered as part of Session 4: COVID 19 & Oral Abstract Presentations, at the 1st Paediatric Society of the African League Against Rheumatism (PAFLAR) Congress, this presentation provided an overview of the factors facilitating the self- and shared-management of juvenile idiopathic arthritis.
Presentation
Full-text available
Delivered as part of Breakout Session E4 at the 15th International Family Nursing Conference, this presentation provided an overview of realist evaluation, exemplified by a study exploring the self- and shared-management of juvenile idiopathic arthritis.
Thesis
This thesis, titled, 'Innovative approaches to the self- and shared- management of arthritis by children, their families and professionals: A realist approach', was submitted in accordance with the requirements for the degree of Doctor of Philosophy at the University of Leeds in June 2021. The aim of the research presented in the thesis was to expl...
Poster
Full-text available
Poster (with pre-recording via the congress system) and live guided tour, delivered as part of HPR - adapting and individualising care poster tour at the 22nd Annual European Congress of Rheumatology. The poster summarised a realist evaluation identifying the factors facilitating the self- and shared-management of JIA by children, young people, the...
Poster
Full-text available
Poster (with pre-recording via the congress system) and live guided tour, delivered as part of PARE poster tour at the 22nd Annual European Congress of Rheumatology. The poster summarised patient and parent organisation services promoting self- and shared-management of JIA in the UK and Ireland.
Poster
Full-text available
Poster (with pre-recording via the congress system), delivered as part of health professionals in rheumatology poster programme at the 22nd Annual European Congress of Rheumatology. The poster summarised an integrative review of self- and shared-management interventions for children, young people, and families living with rheumatic and musculoskele...
Article
Full-text available
Background Various patient/parent organisations provide information, education, and support services to children and young people with JIA and their families. Some organisations are JIA/uveitis focused, while others are umbrella rheumatic and musculoskeletal disease (RMD) organisations or have a broader remit to long-term conditions (LTCs). However...
Article
Full-text available
Background Juvenile idiopathic arthritis (JIA) is a long-term condition, often requiring some element of lifelong management. Therefore, it is logical that children and young people are empowered to become competent at self-managing their health and wellbeing, while families are supported in their shared-management role during childhood, relinquish...
Article
Full-text available
Background Self-management refers to the manner in which individuals manage the symptoms, treatment, physical and psychosocial impact of long-term conditions (LTCs). The importance of equipping children and young people living with LTCs, like rheumatic and musculoskeletal diseases (RMDs) with the capacity to self-manage is increasingly recognised i...
Article
Objective To gain consensus on the Outcome Measures in Rheumatology (OMERACT) core domain set for rheumatology trials of shared decision making (SDM) interventions. Methods The process followed the OMERACT Filter 2.1 methodology, and used consensus-building methods, with patients involved since the inception. After developing the draft core domain...
Presentation
Full-text available
This keynote presentation was delivered at the first Child Health Technology Conference, Child Health Technology 2021 (CHT2021), held virtually from March 2nd to 5th, 2021. The keynote focused on experiences of long-term health conditions during childhood, and the potential utility of technology to help children, young people, and their families se...
Article
Full-text available
Introduction Although patient-reported outcome measures (PROMs) are increasingly used in clinical practice and research, it is unclear whether these instruments cover the perspective of young people with inflammatory arthritis (IA). The aims of this study were to explore whether PROMs commonly used in IA adequately cover the perspective of young pe...
Presentation
Full-text available
A presentation about effective Interventions (experienced based by children and young people with rheumatic diseases) for pain and fatigue, as part of the 'What can YOU do about pain or fatigue?' session at the 26th Paediatric Rheumatology European e-Congress.
Presentation
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A presentation about social media and using it to engage with paediatric rheumatology community, as part of the 'Social media and families' session at the 26th Paediatric Rheumatology European e-Congress.
Presentation
Full-text available
A presentation outlining the elicitation of initial programme theories for the self- and shared- management of juvenile idiopathic arthritis by children, young people, families and professionals involved in their care. This was delivered as a lightning talk during the 26th Paediatric Rheumatology European e-Congress, within the 'Patient/parent expe...
Article
Full-text available
There is a lack of awareness of paediatric rheumatic diseases (PRDs), among the public, and certain groups of healthcare professionals (HCPs), including general practitioners. To help improve international awareness and understanding of PRDs, World yOung Rheumatic Diseases (WORD) Day was established on 18 March 2019. Its aim was to raise awareness...
Article
Full-text available
Background and aim Striving for harmonisation of specialty training and excellence of care in rheumatology, the European League Against Rheumatism (EULAR) established a task force to develop points to consider (PtCs) for the assessment of competences during rheumatology specialty training. Methods A systematic literature review on the performance...
Article
Full-text available
This chapter describes the musculoskeletal (MSK) context in children and young people as an important contributor to the global non-communicable disease burden. Through selected MSK conditions, we describe the impact on patients, families and communities and highlight the challenges that need to be addressed. We focus on opportunities for better wo...
Poster
Full-text available
Objective: There is growing demand to make current research available/accessible in plain language formats for a non-technical audience. Since June 2018, Pfizer has developed abstract plain language summaries (APLS) of research results presented at key oncology congresses. Our approach has implemented best-practice principles of communicating clini...
Presentation
Full-text available
This presentation was delivered as a webcast during the 'Science communication skills for young rheumatologists' session at the 21st EULAR Annual European E-Congress of Rheumatology.
Conference Paper
Full-text available
Background: There is a lack of awareness of paediatric rheumatic diseases (PRDs), among the public, and certain groups of healthcare professionals, such as general practitioners [1]. To help improve awareness and understanding of PRDs, World Young Rheumatic Diseases Day (WORD Day) was established in 2019. Objectives: The aim of WORD Day, which too...
Presentation
Full-text available
This presentation was delivered as a webcast during the 'PARE Abstract Session I' at the 21st EULAR Annual European E-Congress of Rheumatology.
Conference Paper
Full-text available
Background: In 2019, EULAR launched the #Time2Work campaign [1] to raise awareness of the impact of rheumatic and musculoskeletal diseases on individ- uals, society, and the economy. Building on this theme, the Canadian Arthritis Patient Alliance (CAPA) developed a social media campaign and Twitter chat in collaboration with international patient a...
Conference Paper
Full-text available
Background: Comparing drug effectiveness in observational settings is ham- pered by several major threats, among them confounding and attrition bias (patients who stop treatment no longer contribute information, which may over- estimate true drug effectiveness). Objectives: To present points to consider (PtC) when analysing and reporting comparati...
Conference Paper
Full-text available
Background: Comparative effectiveness studies using observational data are increasingly used. Despite their high potential for bias, there are no detailed rec- ommendations on how these studies should best be analysed and reported in rheumatology. Objectives: To conduct a systematic literature review of comparative effectiveness research in rheuma...
Article
Full-text available
Plain english summary: Researchers test treatments to ensure these work and are safe. They do this by studying the effects that treatments have on patients by measuring outcomes, such as pain and quality of life. Often research teams measure different outcomes even though each team is studying the same condition. This makes it hard to compare the...
Article
Full-text available
Background The use of patient-facing health technologies to manage long-term conditions is increasing; however, children and young people may have particular concerns or needs before deciding to use different health technologies. Aims To identify children and young people’s reported concerns or needs in relation to using health technologies to sel...
Conference Paper
Full-text available
Objective: There is a growing demand to make current research available/accessible in plain language formats for a non-technical audience. Since June 2018, Pfizer have developed abstract plain language summaries (APLS) of research results presented at key oncology congresses. Our approach has implemented best- practice principles of communicating c...
Presentation
Full-text available
Description The aims of this session, delivered to year two Child Nursing and Mental Health Nursing students, was to: (i) understand the lived experience of long-term conditions onset during childhood; ii) introduce juvenile-onset rheumatic and musculoskeletal conditions, exemplifying juvenile idiopathic arthritis; and iii) discuss transitional car...
Article
Full-text available
There is increasing recognition of the need to involve the public in health research, but accounts of how best to achieve this are scarce. This article describes public involvement in the TRials Engagement in Children and Adolescents (TRECA) study, which is developing and evaluating multimedia information resources to inform children, young people...
Poster
Full-text available
Objective: There is growing demand to make current medical research available and accessible in plain language formats for a non-technical audience. Since June 2018, Pfizer has developed abstract plain language summaries (APLS) of research results presented at key oncology congresses. Our approach has implemented best-practice principles of communi...
Conference Paper
Full-text available
Background : The European Network for Children with Arthritis (ENCA) is a pan-European network led for and by parents and young people with rheumatic and musculoskeletal diseases (RMDs). The activities of ENCA are delivered on a voluntary basis by parents and young people passionate about improving the care and treatment of children and young peopl...
Poster
Full-text available
Background/Purpose: Big data are defined as data sets that are too large or complex for traditional data-processing application software to adequately deal with. Artifcial Intelligence (AI) includes various statistical techniques which can deal with big data. The current use of these concepts in publications related to rheumatic and musculoskeletal...
Technical Report
Full-text available
The European Network of Fibromyalgia Associations (ENFA) Conference and General Assembly 2019, in partnership with The Arthritis Foundation of Crete, took place on Saturday 18 May 2019 in Heraklion, Crete, Greece. Titled ‘A holistic approach to the management of fibromyalgia across the life course’, the conference enabled delegates from across Euro...
Poster
Full-text available
Background Previous research has identified the need for a randomised controlled trial (RCT) evaluating the most appropriate corticosteroid induction regimen to be used for children and young people (CYP) with juvenile idiopathic arthritis (JIA). A recent qualitative study found that parents and CYP understood trial concepts and were able to identi...
Poster
Full-text available
Background Juvenile idiopathic arthritis (JIA) is an umbrella term for seven relapsing-remitting inflammatory conditions in children and young people (CYP). Early, intensive treatment can prevent long-term damage; however, established drugs exhibit a delayed response, prompting the need for rapid-onset treatment in the form of corticosteroids. Give...
Conference Paper
Full-text available
Background/Purpose: Big data are defined as data sets that are too large or complex for traditional data-processing application software to adequately deal with. Artificial Intelligence (AI) includes various statistical techniques which can deal with big data. The current use of these concepts in publications related to rheumatic and musculoskeleta...
Conference Paper
Full-text available
Background/Purpose: In the expanding era of e-health, a wide range of mobile health applications (apps) have become available to enable people with rheumatic and musculoskeletal diseases (RMDs) to better self-manage their health. However, guidance on the development and evaluation of such apps is lacking. The objective of this EULAR task force was...
Conference Paper
Full-text available
Background/Purpose: Although patient-reported outcome measures (PROMs) are extensively used in clinical practice and research, it is unclear whether the most commonly used instruments adequately cover the perspective of young people with chronic inflammatory arthritis. This study was undertaken to investigate whether the aspects important to young...
Article
Full-text available
Background Juvenile idiopathic arthritis (JIA) is an umbrella term for seven relapsing-remitting inflammatory conditions in children and young people (CYP). Early, intensive treatment can prevent long-term damage; however, established drugs exhibit a delayed response, prompting the need for rapid-onset treatment in the form of corticosteroids. Give...
Article
Full-text available
Background Previous research has identified the need for a randomised controlled trial (RCT) evaluating the most appropriate corticosteroid induction regimen to be used for children and young people (CYP) with juvenile idiopathic arthritis (JIA). A recent qualitative study found that parents and CYP understood trial concepts and were able to identi...
Article
Full-text available
Background Background Corticosteroids (CS) are widely used for rapid-action or induction treatment in children and young people (CYP) with juvenile idiopathic arthritis (JIA). Given a lack of evidence base on CS induction regimen for CYP with JIA, and since criteria for choosing CS are based on healthcare professional (HCP) preference, further rese...
Article
Full-text available
Objective To assess the current use of big data and artificial intelligence (AI) in the field of rheumatic and musculoskeletal diseases (RMDs). Methods A systematic literature review was performed in PubMed MEDLINE in November 2018, with key words referring to big data, AI and RMDs. All original reports published in English were analysed. A mirror...
Conference Paper
Full-text available
Background: A review by the Chief Medical Officer (CMO) of the United Kingdom (UK) in 2018 recommended moving cannabis-based products (CBP) from Schedule 1 of the Misuse of Drugs Regulations 2001 into Schedule 2, allowing CBP to be prescribed for medicinal purposes under controlled conditions by doctors on the Specialist Register of the General Med...
Poster
Full-text available
Background: A review by the Chief Medical Officer (CMO) of the United Kingdom (UK) in 2018 recommended moving cannabis-based products (CBP) from Schedule 1 of the Misuse of Drugs Regulations 2001 into Schedule 2, allowing CBP to be prescribed for medicinal purposes under controlled conditions by doctors on the Specialist Register of the General Med...
Poster
Full-text available
Background Patient organisations have traditionally provided support for patients. However, the method by which people seek support is increasingly desired across social media, particularly among certain populations within the fibromyalgia community who rely on social media as a key form of communication. In addition, the activity of patient organi...
Conference Paper
Full-text available
Background The etiology of Juvenile Idiopathic Arthritis (JIA) remains unknown, despite a range of proposed mechanisms under investigation [1]. However, previous research has revealed biological differences depending on the age of onset of JIA, independent of the classification based on the number of joints involved [2]. Objectives In this parent-...
Conference Paper
Full-text available
Background Patient organisations have traditionally provided support for patients. However, the method by which people seek support is increasingly desired across social media, particularly among certain populations within the fibromyalgia community who rely on social media as a key form of communication. In addition, the activity of patient organi...
Conference Paper
Full-text available
Background Encouraging children and young people (CYP) with rheumatic and musculoskeletal diseases (RMDs) and their families to adopt self-management behaviours from the point of diagnosis is likely to positively influence the long-term health and wellbeing of CYP. However, there is limited evidence of such interventions targeted at CYP and familie...