Personal detailsGraduation - Simon

Mr Simon R. Stones BSc (Hons) MMRS AMRSB
Award-winning Patient Advocate and Consultant
Postgraduate Researcher in Child and Family Health
ORCID iD iconorcid.org/0000-0002-5943-1310

Room 2.30 Baines Wing, Academic Unit of Adult, Child and Mental Health Nursing, School of Healthcare, Faculty of Medicine and Health, University of Leeds, Leeds, West Yorkshire LS2 9JT United Kingdom.

Mobile telephone: +44 (0) 7761 058920
Office telephone: +44 (0) 113 343 1197
Email address: simon@simonstones.com
Website: www.simonstones.com
LinkedIn: uk.linkedin.com/in/simonstones
Twitter: @SimonRStones
Facebook: simonrstones
ResearchGate: www.researchgate.net/profile/Simon_Stones
Publons: www.publons.com/author/1201101/simon-r-stones
University of Leeds Profile: http://medhealth.leeds.ac.uk/profile/1100/1708/simon_stones

Higher education and academic qualifications

2016-2020: PhD, University of Leeds: ‘Innovative approaches to the Self- and shared-Management of ARThritis by children, their families and professionals (iSMART): a realist approach’. Funded by a University of Leeds School of Healthcare Studentship, under the supervision of Professor Veronica Swallow and Dr Linda Milnes.
30 Credits at FHEQ Level 7 (Master’s degree level): HECS 5237M Introduction to Qualitative Research; HECS 5238M Mixed Methods Research

2012-2016: BSc (Hons) Biomedical Sciences with Industrial/Professional Experience (First Class), The University of Manchester. Final year science communication and media project under the supervision of Professor Sheena Cruickshank and Dr Suzan Verstappen. Externally recognised with advanced degree accreditation by the Royal Society of Biology.

Compulsory and further education

2010-2012: Advanced Level Biology (A), Chemistry (A), Physics (B) and Advanced Subsidiary Level Biology (A), Chemistry (A), Physics (A), Psychology (B), Runshaw College.

2005-2010: GCSE Science (A*), Additional Science (A*), Mathematics (A*), Statistics (A), English Language (A), English Literature (A), French (A*), Religious Studies (A*), Level 2 National Certificate in ICT (Distinction), Level 2 Diploma and Level 3 Diploma in Text Processing (Business Professional), St. Joseph’s High School and Sports College.

Employment

2018-present: Strategic Consultant, Collaboro Consulting, Bolton, United Kingdom.
In a freelance capacity, I provide research support and advice to help clients develop and sustain the way in which they involve patients and members of the public in research and advocacy activities. I also provide medical writing and editing services, including the translation of scientific content into accessible information for patients, carers and members of the public.

2015-present: Private Tutor, Tutorfair, United Kingdom.
I am a registered private tutor for young people from a variety of backgrounds, specialising in Chemistry and Physics up to Advanced (A) Level, and Biology up to degree level.

2014-2015: Research Associate, Double Helix Consulting / Complete Clarity (McCann Complete Medical), Macclesfield, United Kingdom.
As part of my industrial placement from The University of Manchester, I worked across a variety of strategic consulting, pricing and market access projects in multiple therapeutic areas, for clients in the pharmaceutical and biotechnology industry. Project types that I worked on included insights generation and analysis, patient journey development, brand and value strategy, literature reviews, pricing analyses and health technology appraisals. In addition, I was involved in a variety of business development opportunities, market landscape assessments and the development of Double Helix’s social media strategy. This twelve-month placement enabled me to advance my ability to synthesise complex data into relevant and concise project deliverables. I developed essential skills in project management of national and international studies for global pharmaceutical products, as well broadening my written and oral communication skills and my awareness of global healthcare systems, structures and policies.

2013: Student Ambassador, The University of Manchester Faculty of Life Sciences, Manchester, United Kingdom.
I supported the Faculty of Life Sciences on undergraduate open days and pre-acceptance interviews, by offering individual and group tours of the campus, in addition to sharing insights into the life of an undergraduate biomedical scientist to prospective students and their families.

2010-2014: Website and Marketing Manager, St. Joseph’s High School, Bolton, United Kingdom.
I was appointed the school’s first Website and Marketing Manager, following a period of volunteering. During my time at St. Joseph’s, I was responsible for driving forward the school’s marketing strategy, with a particular emphasis on digital marketing in the community. I co- developed the school’s website, established several social media platforms, and launched a new community magazine. This enabled me to develop key leadership and management skills, influencing the school development plan with my vision for an inclusive and supportive digital environment for students, parents, carers, staff and the wider community. In addition, I co-ordinated the school’s volunteering scheme, and academic learning resource centre, where I engaged students to develop their learning techniques and critical thinking skills.

Academic distinction, awards and prizes

  1. Postgraduate Researcher Oral Presentation Award, Runner-up, awarded by University of Leeds’ School of Healthcare, 2018.
  2. WEGO Health Award Healthcare Collaborator: Patient, Winner, The 6th Annual WEGO Health Awards, 2017.
  3. Edgar Stene Prize, Winner, awarded by the European League Against Rheumatism (EULAR), 2016.
  4. Making a Difference Award for Outstanding Public Engagement Initiative (Student), Winner, awarded by The University of Manchester, 2015.
  5. Volunteer of the Year Awards, Highly Commended, awarded by The University of Manchester, 2014.
  6. Level 1 Biology Tutorial Project, Team Winner, awarded by The University of Manchester, 2013.
  7. The Carol Lawrenson Prize for Effort and Achievement in Science, Winner, awarded by Runshaw College, 2012.
  8. Volunteering England Gold Award for Dedication in Volunteering, Winner, awarded by Volunteering England, 2012.
  9. V10 Award, awarded by vInspired, 2012.
  10. AS Biology Student of the Year, Winner, awarded by Runshaw College, 2011.
  11. AS Psychology Student of the Month, Winner, awarded by Runshaw College, May 2011.
  12. AS Biology Student of the Month, Winner, awarded by Runshaw College, April 2011.
  13. vImpact Award, awarded by vInspired, 2011.
  14. The Brian Brady Memorial Prize for Outstanding All-Round Contribution to School Life by a Senior Student, Winner, awarded by St. Joseph’s High School and Sports College, 2010.
  15. V50 Award, awarded by vInspired, 2010.
  16. The Eric Hester Award for Determination and Effort, Winner, awarded by St. Joseph’s High School and Sports College, 2009.
  17. Senior Students’ Bishop’s Award for Community and Service, Highly Commended, awarded by The Diocese of Salford, 2007.

Prize and award nominations

  1. Postgraduate Researcher of the Year, Nominee, University of Leeds, 2018.
  2. WEGO Health award Lifetime Achievement, Nominee, The 7th Annual WEGO Health Awards, 2018.
  3. The Show Trust Power List 2018, Nominee, The Shaw Trust, 2018.
  4. Liebster Award, Nominee, Liebster Award 2018, 2018. 
  5. UK Blog Awards Health and Social Care Category, Nominee, UK Blog Awards 2018, 2018.
  6. UK Blog Awards International Influencer Category, Nominee, UK Blog Awards 2018, 2018.
  7. WEGO Health Award Best in Show: Twitter, Nominee, The 6th Annual WEGO Health Awards, 2017.
  8. WEGO Health award Lifetime Achievement, Nominee, The 6th Annual WEGO Health Awards, 2017.

Certification

  1. Inbound Certification, issued by HubSpot Academy, 2015-Current.
  2. Enhanced Certificate, issued by Disclosure and Barring Service, 2010-Current.
  3. Full UK Driving Licence, issued by Driving Standards Agency, 2011-present.
  4. Level 3 Diploma in Text Processing (Business Professional), issued by OCR, 2011.
  5. Level 3 Certificate in Text Processing (Business Professional), issued by OCR 2010.
  6. Level 3 Award in Text Processing (Business Professional), issued by OCR, 2010.
  7. Level 2 Diploma in Text Processing (Business Professional), issued by OCR, 2010.
  8. Level 2 Certificate in Text Processing (Business Professional), issued by OCR, 2010.
  9. Level 2 Award in Text Processing (Business Professional), issued by OCR, 2010.
  10. Level 1 Certificate in Text Processing (Business Professional), issued by OCR, 2009.
  11. Level 1 Award in Text Processing Business Professional), issued by OCR, 2009.
  12. Entry Level Award in Initial Text Processing, issued by OCR, 2008.
  13. Entry Level Certificate in French, issued by OCR, 2008.
  14. Key Skills Certificate in ICT, issued by EDEXCEL, 2008.

Continuous professional development records

  1. Market Research Society CPD Scheme, 08 October 2018-Present.
  2. Royal Society of Biology CPD Scheme, 23 May 2018-Present.
  3. Royal Society of Biology CPD Scheme, 23 May 2017-22 May 2018.
  4. Royal Society of Biology CPD Scheme, 23 May 2016–22 May 2017.
  5. Royal Society of Biology CPD Scheme, 23 May 2015–22 May 2016.
  6. Society of Biology CPD Scheme, 23 May 2014–22 May 2015.

Courses and training

  1. Enhancing Technique in Realist Qualitative Interviewing, delivered by the University of Liverpool, October 2018.
  2. Ethics in Medicines Development, delivered by EURODIS, October 2018.
  3. EURODIS Winter School on Scientific Innovation and Translational Research (online), delivered by EURODIS, October 2018.
  4. Myositis, delivered by American College of Rheumatology, October 2018.
  5. Finance: Time Value of Money, delivered by Pedago LLC, October 2018.
  6. Good Clinical Practice Refresher, delivered by the National Institute for Health Research, August 2018.
  7. Introduction to Good Clinical Practice eLearning (Primary/Secondary Care), delivered by the National Institute for Health Research, August 2018.
  8. Informed Consent in Paediatric Research, delivered by the National Institute for Health Research, August 2018.
  9. Informed Consent with Adults Lacking Capacity, delivered by the National Institute for Health Research, August 2018.
  10. Keeping Children Safe/Framework for Action Level 1, delivered by Bolton Safeguarding Children’s Board – Multi Agency Training, August 2018.
  11. The musculoskeletal system and inflammatory arthritis, delivered by the British Society for Rheumatology, August 2018.
  12. Immunology and inflammatory arthritis, delivered by the British Society for Rheumatology, August 2018.
  13. Epidemiology and inflammatory arthritis, delivered by the British Society for Rheumatology, August 2018.
  14. An introduction to inflammatory arthritis, delivered by the British Society for Rheumatology, August 2018.
  15. Our Care Through Our Eyes: Self-harm and care pathways for children and young people, delivered by The University of Nottingham, August 2018.
  16. An Introduction to Emotional Intelligence, delivered by the University of Leeds, May 2018.
  17. Sustainability in Practice, delivered by the University of Leeds, April 2018.
  18. The Learning Zone, delivered by Cochrane Crowd, April 2018.
  19. Understanding the General Data Protection Regulation, delivered by University of Groningen, February 2018.
  20. The Role of Health Economics in Innovation, delivered by Translate, February 2018.
  21. Healthcare Research, delivered by Coventry University, February 2018.
  22. The Ethical Issues of Research Involving Children, delivered by the NHS Health Research Authority, November 2017.
  23. European Patient Ambassador Programme, delivered by European Lung Foundation, August 2017.
  24. Sharpening Fibromyalgia Diagnostic and Management Skills: Improving the Patient Experience, delivered by Paradigm Medical Communications, August 2017.
  25. An Introduction to Public Involvement in Research, delivered by Health and Care Research Wales, August 2017.
  26. Masterclass in Realist Methods, delivered by the White Rose Social Science Doctoral Training Centre, July 2017.
  27. Ethical Issues in Online Research, delivered by the University of Leeds, May 2017.
  28. Developing Innovative Research With Children and Young People, delivered by the University of Edinburgh and the Centre for Research on Families and Relationships, April 2017.
  29. Disabled Children and Young People, delivered by the Royal College of General Practitioners, April 2017.
  30. Preparing For Your Transfer Viva, delivered by the University of Leeds, April 2017.
  31. Introduction to SPSS, delivered by the University of Leeds, April 2017.
  32. Standing Up For Science, delivered by Sense about Science, April 2017.
  33. NHS Ethical Approval Process, delivered by the University of Leeds, March 2017.
  34. A Balancing Act – Dealing With The Stress of Doing a Research Degree, delivered by the University of Leeds, March 2017.
  35. Increasing the Visibility of Your Research, delivered by the University of Leeds, March 2017.
  36. Digital Images Theory, delivered by the University of Leeds, March 2017.
  37. Ownership, Confidentiality and Secrecy in Research, delivered by the University of Leeds, February 2017.
  38. Introduction to Realist Evaluation and Synthesis, delivered by the University of Liverpool, January 2017.
  39. Mixed Methods Research, delivered by University of Leeds, January 2017.
  40. Data Protection and Research, delivered by University of Leeds, January 2017.
  41. Research Data Management Essentials, delivered by University of Leeds, January 2017.
  42. Research With Human Participants, delivered by University of Leeds, January 2017.
  43. Introduction to NVivo, delivered by University of Leeds, December 2016.
  44. Literature Searching For Your Research Degree, delivered by University of Leeds, December 2016.
  45. Working Effectively with Supervisors, delivered by University of Leeds, December 2016.
  46. Time Management During Your Research Degree, delivered by University of Leeds, December 2016.
  47. Project Managing Your Research Degree, delivered by University of Leeds, December 2016.
  48. Sociology, delivered by Western Sydney University, November 2016.
  49. Foundations of Psychology, delivered by RMIT University, November 2016.
  50. Principles of Project Management, delivered by Polytechnic West, November 2016.
  51. Starting Your Research Degree in Medicine and Health, delivered by University of Leeds, November 2016.
  52. Talking About Your Research, delivered by University of Leeds, October 2016.
  53. Introduction to EndNote, delivered by University of Leeds, October 2016.
  54. Introduction to Qualitative Research Methods, delivered by University of Leeds, October 2016.
  55. Display Screen Equipment, delivered by University of Leeds and British Safety Council, October 2016.
  56. Manual Handling, delivered by University of Leeds and British Safety Council, October 2016.
  57. Fire Safety, delivered by University of Leeds and British Safety Council, October 2016.
  58. Leadership Microlearning, delivered by Work Ready Graduates, June 2016.
  59. Immune Response and Disease, delivered by The University of Manchester, May 2016.
  60. Neuroinflammation in Health and Disease, delivered by The University of Manchester, May 2016.
  61. Toxins, Toxicant and Toxicity, delivered by The University of Manchester, May 2016.
  62. Introduction to Quality Improvement for Patients and Public, delivered by Healthcare Quality Improvement Partnership, April 2016.
  63. Innate Immunity in the Brain in Health and Disease, delivered by Henry Stewart Talks Ltd, March 2016.
  64. The Blood Brain Barrier in Multiple Sclerosis Lesion, delivered by Henry Stewart Talks Ltd, March 2016.
  65. Advanced Endocrinology, delivered by The University of Manchester, January 2016.
  66. Advanced Immunology, delivered by The University of Manchester, January 2016.
  67. Human Reproductive Biology, delivered by The University of Manchester, January 2016.
  68. Writing in the Sciences, delivered by Stanford University, November 2015.
  69. Science Communication Training, delivered by Science Made Simple and The University of Manchester, October 2015.
  70. Online Marketing, delivered by HP LIFE e-Learning, October 2015.
  71. Getting Your Research Published: The BMJ Perspective, delivered by BMJ Learning, August 2015.
  72. Spontaneous Pneumothorax – Assessment and Management, delivered by BMJ Learning, August 2015.
  73. Introducing British Sign Language, delivered by British Sign, May 2015
  74. Legal and Ethical Guidelines Training – For Market Researchers, delivered by British Healthcare Business Intelligence Association, August 2014.
  75. Adverse Event Reporting in Market Research, delivered by British Healthcare Business Intelligence Association, August 2014.
  76. Smoking Cessation – In Association with NICE, delivered by BMJ Learning, July 2014.
  77. Dissection, delivered by the Royal Veterinary College and Society of Biology, July 2014.
  78. STEM Ambassador Training, delivered by STEMNET, June 2014.
  79. Business Enterprise in the Life Sciences, delivered by the Alliance Manchester Business School, June 2014.
  80. The Art of Photography, delivered by RMIT University, June 2014.
  81. Astronomy: Discovering the Universe, delivered by Curtin University, June 2014.
  82. Becoming Human: Anthropology, delivered by Macquarie University, June 2014.
  83. Cell Metabolism and Metabolic Control, delivered by The University of Manchester, May 2014.
  84. Clinical Drug Development, delivered by The University of Manchester, May 2014.
  85. Human Physiology, delivered by The University of Manchester, May 2014.
  86. Immunology, delivered by The University of Manchester, May 2014.
  87. Clinical Sciences Research Module, delivered by The University of Manchester, April 2014.
  88. Food, Nutrition and Your Health, delivered by Open2Study, April 2014.
  89. The Human Body as a Machine, delivered by Flinders University, April 2014.
  90. Microbiology and Forensic Science, delivered by Jordan University of Science and Technology, March 2014.
  91. Cell Membrane Structure and Function, delivered by The University of Manchester, January 2014.
  92. Critical Writing Skills, delivered by The University of Manchester, January 2014.
  93. Cells and Tissues in Human Disease, delivered by The University of Manchester, January 2014.
  94. Data Handling Skills 3, delivered by The University of Manchester, January 2014.
  95. Endocrinology, delivered by The University of Manchester, January 2014.
  96. Haematology, delivered by The University of Manchester, January 2014.
  97. Physiology and Biomedical Sciences Experimental Design Module, delivered by The University of Manchester, January 2014.
  98. Understanding Common Diseases, delivered by University of Wollongong, December 2013.
  99. Liverpool Care Pathway, delivered by BMJ Learning, July 2013.
  100. Childhood Immunisation, delivered by BMJ Learning, July 2013.
  101. Peer Assisted Study Sessions, delivered by The University of Manchester, June 2013.
  102. Biochemistry, delivered by The University of Manchester, May 2013.
  103. Data Handling Skills 2, delivered by The University of Manchester, May 2013.
  104. Drugs: From Molecules to Man, delivered by The University of Manchester, May 2013.
  105. ECG Interpretation in Athletes: Identify Your Learning Needs, delivered by BMJ Learning, May 2013.
  106. Excitable Cells, delivered by The University of Manchester, May 2013.
  107. From Molecules to Cells, delivered by The University of Manchester, May 2013.
  108. Introduction to Experimental Biology, delivered by The University of Manchester, May 2013.
  109. Biodiversity, delivered by The University of Manchester, January 2013
  110. Body Systems, delivered by The University of Manchester, January 2013.
  111. Chemistry for Bioscientists 1, delivered by The University of Manchester, January 2013.
  112. Data Handling Skills 1, delivered by The University of Manchester, January 2013.
  113. Genes, Evolution and Development, delivered by The University of Manchester, January 2013.
  114. Introduction to Laboratory Science, delivered by The University of Manchester, January 2013.
  115. Molecular Genetics, delivered by The University of Manchester, January 2013.
  116. Science Communication and Media Training, delivered by BBC and The University of Manchester, November 2012.
  117. Health and Safety Online Course, delivered by The University of Manchester, September 2012.
  118. Health and Safety in the Laboratory and Field, delivered by OpenLearn, July 2012.
  119. Everyday First Aid Skills, delivered by British Red Cross, July 2012.
  120. Keeping Children Safe/Framework for Action Level 1, delivered by Bolton Safeguarding Children’s Board – Multi Agency Training, June 2012.
  121. Counselling Skills, delivered by Runshaw College, May 2012.
  122. Basic Life Support, delivered by Runshaw College, April 2011.
  123. Peer Mediation, delivered by St. Joseph’s High School and Sports College, December 2009.

General volunteering

  1. 2018-present: Alumni Ambassador, The University of Manchester.
  2. 2018-present: Champion, Time To Change.
  3. 2016-present: Alumni Mentor, The University of Manchester Network.
  4. 2015-present: Ambassador, PatientsLikeMe.
  5. 2015-2017: Marketing and Communications Co-ordinator, The Pilgrims.
  6. 2014-2015: Volunteer, Embrace Liverpool Conference.
  7. 2014-present: Antibiotic Guardian, Public Health England.
  8. 2013-2014: PASS Leader, The University of Manchester Faculty of Life Sciences.
  9. 2013-2014: Facebook Administrator, The University of Manchester Faculty of Life Sciences Biomedical Sciences 2014 cohort entrants group.
  10. 2013: Engagement Volunteer, Fastbleep Biology Schools.
  11. 2012-present: Patient Research Ambassador and Representative, various organisations in the United Kingdom, Europe and Worldwide.
  12. 2012-2017: Marketing and Communications Co-ordinator, HCPT Manchester Region.
  13. 2011-2015: Volunteer Helper, HCPT Manchester Region Group 216.
  14. 2010-2012: Student Ambassador, Runshaw College.
  15. 2010-2011: Administration Assistant, St. Joseph’s High School.
  16. 2009-2011: Gifted and Talented Summer School Mentor, St. Joseph’s High School and Sports College.
  17. 2009-2010: Deputy Head Boy, St. Joseph’s High School and Sports College.
  18. 2009: Work Experience Student, Sacred Heart Primary School.
  19. 2008-2010: School Council Candidate, St. Joseph’s High School and Sports College.
  20. 2008-2009: Prefect, St. Joseph’s High School and Sports College.
  21. 2008-present: Marketing Co-ordinator, Power Brush International.
  22. 2008: Design Adviser, PGM Plumbing and Heating.
  23. 2007-2010: Student Co-ordinator of Learning Resources, St. Joseph’s High School and Sports College.
  24. 2006-2010: Head Librarian, St. Joseph’s High School and Sports College.
  25. 2005-2010: Youth SVP Member, St. Joseph’s High School and Sports College.

Professional and administrative responsibilities

Membership of professional societies

  1. Market Research Society, Member (MMRS), 2018-present.
  2. School and Public Health Nurses Association (SAPHNA), Member, 2018-present.
  3. The Royal Commonwealth Society, Associate Fellow, 2018-present.
  4. Academy of Communication in Healthcare, Student Member, 2018-present.
  5. Children’s Research Network for Ireland and Northern Ireland, Member, 2017-present.
  6. University and College Union, Student Member, 2017-present.
  7. The Royal Society of Biology, Associate Member (AMRSB), 2016-present.
  8. The British Society for Paediatric and Adolescent Rheumatology, Associate Member, 2016-present.
  9. The British Society of Rheumatology, Associate Member, 2016-present.
  10. American College of Rheumatology, Student Member, 2016-present.

Management responsibilities

  1. European Network for Children with Arthritis, Board Member, 2018-present.
  2. European Network of Fibromyalgia Associations, Treasurer/Board Member, 2018-present.
  3. RAiISE, Vice Chair/Trustee, 2018-present.
  4. Fibromyalgia Action UK, Research Liaison/Trustee, 2016-present.
  5. Why Infinity, Founder, 2014-2017.

Mentoring responsibilities

  1. EULAR/EMEUNET Ambassador Programme, Mentor, 2018.

Editorial responsibilities

  1. Chronic Illness Bloggers Network, Blogger, 2018-present.
  2. BMC, Author, 2018.
  3. Arthur’s Place, Blogger, 2017-present.
  4. Patient Research Exchange, Writer and Contributor, 2016.
  5. Huffington Post, Author, 2016.
  6. Cochrane UK Students 4 Best Evidence, Contributor, 2014-present.
  7. Oxbridge Biotech Roundtable, Guest Medical Writer, 2013-2014.
  8. Greater Manchester Local Record Centre, Blogger, 2013.

Reviewing responsibilities

  1. EULAR Annual European Congress of Rheumatology, EMEUNET Abstract Reviewer, 2019.
  2. BMJ Open Quality, Peer Reviewer, 2018-present.
  3. Journal of Participatory Medicine, Peer Reviewer, 2018-present.
  4. JMIR Research Protocols, Peer Reviewer, 2018-present.
  5. JMIR Rehabilitation and Assistive Technologies, Peer Reviewer, 2018-present.
  6. Cochrane Colloquium 2018, Abstracts Committee Member, 2018.
  7. Cochrane Crowd Cardiotocography Citation Screening Task on behalf of The Health Improvement Studies Institute (THIS Institute), Screener, 2018.
  8. Edgar Stene Prize 2018, Member of the ARMA Judging Panel, 2017-2018.
  9. 6th Annual WEGO Health Awards, Semi-Finalist Judge in the Patient Leader Hero Category, 2017.
  10. JMIR MHealth and UHealth, Peer Reviewer, 2017-present.
  11. Patient-Centered Outcomes Research Institute (PCORI), Peer Reviewer, 2017-present.
  12. Edgar Stene Prize 2017, Member of the ARMA Judging Panel, 2016-2017.
  13. FOREUM, Lay Reviewer, 2016-present.
  14. Versus Arthritis (formerly Arthritis Research UK), Patient Insight Partner, 2016-present.
    a. Stacking the odds towards a cure challenge, March-November 2017.
    b. Pain challenge, January 2017.
    c. Medical technologies proof of concept award, August 2016.
    d. Health services research award, July 2016.
  15. Interactive Journal of Medical Research, Peer Reviewer, 2015-present.
  16. Journal of Medical Internet Research (JMIR), Peer Reviewer, 2015-present.
  17. EULAR, Patient Research Partner, 2015-present.
  18. NIHR Dissemination Centre, Rater, 2015-present.
  19. NIHR Evaluation, Trials and Studies Co-ordinating Centre, Public Reviewer, 2015-present.
  20. NIHR Central Commissioning Facility, Peer Reviewer, 2015-present.
  21. BioMed Central Research Involvement and Engagement Journal, Lay Reviewer, 2014-present.
  22. British Medical Journal, Patient Reviewer, 2014-present.
  23. Cochrane UK Excerpta Medica Database, Citizen Scientist, 2014-present.
  24. NIHR CRN: Children/Versus Arthritis Paediatric Rheumatology Clinical Studies Group, Lay Reviewer, 2012-present.

Membership of grant funding panels

  1. Arthritis Research UK Disease Subcommittee Review of Stacking the Odds towards a Cure Challenge, Guest Reviewer, March-November 2017.
  2. Arthritis Research UK Health Services Grant Research Panel, Patient Insight Partner, July 2016.

Membership of stakeholder groups and strategic committees

  1. Grow MedTech: Connecting Capability for a Competitive Future Advisory Board, Member, 2018-present.
  2. Global Alliance for Musculoskeletal Health Paediatric Task Force, Member, 2018-present.
  3. International Foundation for Autoimmune and Autoinflammatory Arthritis (IFAA) ACTion Council, Member, 2018-present.
  4. BRACE Rapid Evaluation Centre Health and Care Panel, Member, 2018-present.
  5. Im-Patient Conference, European Steering Board Member, 2018.
  6. INVOLVE Children and Young People’s Working Group, Member, 2018-present.
  7. EULAR Young PARE Visibility and Global Affairs Committee, Co-Chair, 2018-2019.
  8. EULAR Young PARE Digital Communication Committee, Chair, 2018-2019.
  9. BSPAR Parent Group, Member, 2017-2018.
  10. Discovery Partners Greater Manchester, Member, 2017-present.
  11. Savvy Cooperative, Savvy Pioneer, 2017-present.
  12. NIHR Manchester Clinical Research Facility Young Person’s Advisory Group, Advisor, 2017-2018.
  13. Hyvr Advisory Panel, Member, 2017-present.
  14. iCAN Partner Engagement Communications Working Group, Member, 2017-2018.
  15. Translate: Realising Medical Technologies Innovation in the Leeds City Region Advisory Board, Member, 2017-2018.
  16. EMEUNET Social Media Subgroup, Member, 2017-present.
  17. EMEUNET Working Group, Member, 2017-present.
  18. EULAR Study Group for Collaborative Research, Member, 2017-present.
  19. Carion Fenn Foundation, Support Group Presenter, 2017-present.
  20. Carion Fenn Foundation, Research Adviser, 2017-present.
  21. iCAN Conference Committee, Member, 2017-2018.
  22. iCAN External Advisory Board, Member, 2017-2018.
  23. RAiISE, Committee Member, 2017-present.
  24. NIHR Patient Research Ambassador Initiative, Operational Group Member, 2016-present.
  25. iCAN Youth Council, Member, 2016-present.
  26. Your Rheum, Member, 2016-2018.
  27. University of Southampton MRC Lifecourse Epidemiology Unit/Arthritis Research UK Centre for Musculoskeletal Health and Work Stakeholder Group, Member, 2016.
  28. Royal College of Paediatrics and Child Health (RCPCH) &Us, Member, 2015-2018.
  29. NIHR Patient Research Ambassador Initiative, Virtual Lay Group Member, 2015-2018.
  30. EULAR Young PARE Working Group, Member, 2015-2019.
  31. The Unsworth Group Practice Patient Participation Group, Member, 2014-present.
  32. Patients Included, Signatory, 2014-present.
  33. The University of Manchester Centre for Musculoskeletal Research User Group, Virtual Member, 2013-present.
  34. The University of Manchester Primary Care Research in Manchester Engagement Resource (PRIMER), Virtual Member, 2013-present.
  35. NIHR CRN: Children/Versus Arthritis Paediatric Rheumatology Consumer Topic Specific Group, Member, 2012-present.
  36. NIHR CRN: Children/Versus Arthritis Paediatric Rheumatology Clinical Studies Group, Member, 2012-present.
  37. Central Manchester University Hospitals NHS Foundation Trust Youth Forum, Member, 2010.

Membership of research study steering committees, trial management groups and advisory groups

  1. EULAR points to consider when analysing and reporting comparative effectiveness research with observational data in rheumatology, European League Against Rheumatism, Task Force Member, 2018-present.
  2. Identifying and understanding the most effective ways to inform children and young people with long-term health conditions about technology interventions to promote optimum healthcare, University of York, Co-investigator, 2018-present.
  3. Developing peer Mentorship to Improve self-management of Osteoarthritis: A feasibility study (aMIgO), University of Leeds, Academic expert reviewer, 2018-present.
  4. Guidelines for inflammatory arthritis working group, British Society of Rheumatology, Member, 2018-present.
  5. EULAR recommendations on the assessment of competences in rheumatology across Europe, European League Against Rheumatism, Task Force Member, 2018-present.
  6. NIHR Digital Programme Reaching Out to Patients: A Digital Patient Engagement System Project, Member, National Institute for Health Research Clinical Research Network (NIHR CRN), Co-applicant, 2017-2018.
  7. Challenges and opportunities of involving patients, carers and members of the public in research led by postgraduate research students and early career researchers, NIHR CLAHRC North West London/University of Leeds, Collaborator, 2017-present.
  8. Understanding how people with rheumatic and musculoskeletal diseases use social media for health-related purposes, King’s College London/Medical University of Vienna/University of Perugia/University of Leeds, Co-lead investigator, 2017-present.
  9. EULAR points to consider for the development, evaluation and implementation of mobile health applications for patient self-management in rheumatology, European League Against Rheumatism, Task Force Member, 2017-present.
  10. EULAR points to consider/recommendations for including the perspective of young patients with inflammatory arthritis into patient-reported outcomes measures, European League Against Rheumatism, Task Force Member, 2017-present.
  11. Little wins, Janssen Immunology EMEA/Tonic Life Communications, Steering Committee Member, 2017-2018.
  12. Youth-identified needs in the transition from paediatric to adult care for children and youth with chronic and rare diseases, iCAN/Connecticut Children’s Medical Centre, iCAN Youth Council Member, 2017-present.
  13. Health assessment questionnaire study, The University of Manchester, Patient Research Partner, 2017.
  14. Innovative approaches to Self- and shared-Management of ARThritis by children, their families and professionals (iSMART): A realist approach, University of Leeds, Chief Investigator, 2016-present.
  15. EULAR School of Rheumatology registration portal and mobile application, European League Against Rheumatism, Task Force Member, 2016-2017.
  16. Management for adults with chronic rhinosinusitis (MACRO), University College London evidENT, Patient Panel Advisor, 2016-2017.
  17. Apps for adolescents with chronic rheumatic disease (Apps for CRD):  a qualitative study of young people’s, parents’ and professionals’ views on required components of a mobile health-app to support self-care, University of Leeds, Co-investigator, 2016-2017.
  18. Developing and enhancing the usefulness of patient experience and narrative data (DEPEND), The University of Manchester, Study Steering Committee Member, 2016-2018.
  19. Trials engagement in children and adolescents (TRECA), University of York, Patient and Parent Advisory Group Member, 2016-present.
  20. Steroid induction regimen for juvenile idiopathic arthritis (SIRJIA), Alder Hey Children’s NHS Foundation Trust, Trial Management Group Member, 2016-present.
  21. Arthritis is not just an old person’s disease: a multi-method study (MyJIA), The University of Manchester, Chief Investigator, 2015-2017.
  22. Cloudy with a chance of pain, The University of Manchester, Patient and Public Involvement Group Member, 2015-present.
  23. Joint education project (JEP), British Society for Paediatric and Adolescent Rheumatology Parent Group, Member, 2015-2017.
  24. Quality improvement medicines safety network (MedsIQ), Royal College of Paediatric and Child Health, Advisory Group Member, 2015-2016.
  25. Experiences of primary care services, The University of Oxford and Healthtalk.org, Advisory Panel Member, 2015-2016.
  26. Maximising therapeutic utility for rheumatoid arthritis (MATURA), The University of Manchester and Queen Mary University of London, Patient Advisory Group Member, 2014-present.
  27. Mobile applications for children with chronic long-term conditions (MobApp), The University of Manchester and University of Leeds, Co-investigator, 2013-2016.

Membership of academic research groups

  1. University of Edinburgh, Centre for Research on Families and Relationships, Associate PhD Student, 2017-present.
  2. Asthma UK Centre for Applied Research (University of Leeds, Schools of Medicine, Healthcare and Psychology, Paediatric Respiratory Unit and Leeds Teaching Hospitals NHS Trust), Affiliated PhD Student, 2017-present.
  3. University of Leeds, School of Healthcare Early Career Research Network, Early Career Researcher, 2016-present.
  4. University of Leeds, School of Healthcare, Children, Young People and Families Research and Scholarship Group, Doctoral Researcher, 2016-present.
  5. University of Leeds, School of Healthcare, Maternal, Child and Family Health Research Group, Doctoral Researcher, 2016-present
    a. Website co-lead, 2018-present.
    b. Social media co-lead, 2017-present.

Membership of NHS Foundation Trusts

  1. Bolton NHS Foundation Trust, Public Member.
  2. Manchester University Hospitals NHS Foundation Trust, Public Member.
  3. Salford Royal NHS Foundation Trust, Public Member.
  4. The Christie NHS Foundation Trust, Public Member.
  5. The Pennine Acute Hospitals NHS Foundation Trust, Public Member.
  6. Wrightington, Wigan and Leigh NHS Foundation Trust, Public Member.

Membership of patient organisations

  1. Crohn’s & Colitis UK, Member, 2018-present.
  2. Arthritis Care, Member, 2017-2018.
  3. My Disability Matters Club, Member, 2017-present.
  4. Psoriasis and Psoriatic Arthritis Alliance (PAPAA), Member, 2016-present
  5. Psoriatic Arthritis Support Group (PsAZZ), Member, 2016-present.

Association with organisations

  1. Scope, Disability Gamechanger, 2018-present.
  2. Chronic Illness Bloggers, Member, 2018-present.
  3. Cochrane, Member, 2018-present.
  4. Time to Change Champions Network, Champion, 2018-present.
  5. Consumer & Community Health Research Network, Member, 2017-present.
  6. Chronically Academic, Network Member, 2017-present.
  7. Building a Research Community, Patient Research Ambassador, 2017-present.
  8. Primary Care Diabetes Society, Member, 2017-present.
  9. Public Involvement Standards Development, Network Member, 2017-present.
  10. WEGO Health, Health Expert, 2017-present.
  11. WEGO Health, Patient Leader Network Member, 2017-present.
  12. European Network on Independent Living (ENIL), Individual Member, 2017-present.
  13. European Medicines Agency, Registered Stakeholder, 2017-present.
  14. Voice of Young Science, Early Career Researcher, 2017-present.
  15. Vitae, Member, 2016-present.
  16. Arthritis National Research Foundation, Cure Arthritis Crew, 2016-present.
  17. Equal North Research Network, Member, 2016-present.
  18. Science Live, Registered User, 2016-present.
  19. EuroScience, Associate Member, 2016-present.
  20. CreakyJoints, Member, 2015-present.
  21. Manchester Academic Health Science Centre, Friend, 2015-present.
  22. Emerging EULAR Network (EMEUNET), Member, 2015-present.
  23. Citizen Scientist, Member, 2015-present.
  24. Coalition for Collaborative Care, Member, 2014-present.
  25. Cochrane Consumer Network, Consumer Member, 2014-present.
  26. STEMNET, STEM Ambassador, 2014-present.
  27. Healthcare Quality Improvement Partnership, Member, 2014-present.
  28. British Healthcare Business Intelligence Association, Member, 2014-2015.
  29. Tweet Your Science, Listed Scientist/Researcher, 2014-present.
  30. PatientsLikeMe, Member, 2014-present.
  31. NHS Research and Development Forum, Member, 2014-present.
  32. James Lind Alliance, Affiliate, 2014-present.
  33. British Science Association, Supporter, 2014-present.
  34. British Pharmacological Society, Undergraduate Member, 2013-2016.
  35. North West People in Research Forum, Member, 2013-2018.

Organisation of scientific meetings

  1. 4th EULAR Young PARE Conference, Organising Committee Member, 04 April 2019, Prague, Czech Republic.
  2. 1st European Im-Patient Conference, Steering Board Member, 17 October 2018, London, United Kingdom.
  3. 21st EULAR Annual European Conference of People with Arthritis and Rheumatism in Europe (PARE), Task Force Member, 15–18 February 2018, Brussels, Belgium.
  4. 3rd EULAR Young PARE Conference, Organising Committee Member, 15 February 2018, Brussels, Belgium.
  5. 20th EULAR Annual European Conference of People with Arthritis and Rheumatism in Europe (PARE), Task Force Member, 23–26 February 2017, Cascais, Lisbon, Portugal.
  6. 2nd EULAR Young PARE Conference, Organising Committee Member, 21-23 October 2016, Retie, Belgium.
  7. NIHR at 10 Conference, Patient and Public Involvement Advisory Committee Member, 18 May 2016, London, United Kingdom.
  8. 19th EULAR Annual European Conference of People with Arthritis and Rheumatism in Europe (PARE), Task Force Member, 15-17 April 2016, Sofia, Bulgaria.

Invited contributions to regional, national and international meetings

  1. Actelion Global Scientific Information (GSI) Lunch Talk, Speaker, 06 December 2018, Basel, Switzerland.
  2. EULAR points to consider for the development, evaluation and implementation of mobile health applications for patient self-management in rheumatology Task Force meeting, Task Force Member, 29 November 2018, Amsterdam, The Netherlands.
  3. EULAR recommendations on the assessment of competences in rheumatology across Europe Task Force meeting, Task Force Member, 19 November 2018, Amsterdam, The Netherlands.
  4. EULAR points to consider/recommendations for including the perspective of young patients with inflammatory arthritis into patient-reported outcomes measures Task Force meeting, Task Force Member, 08 November 2018, Vienna, Austria.
  5. University College Dublin’s Facilitating a collaborative approach to arthritis and rheumatic disease research conference, Invited Speaker, 02 November 2018, Dublin, Ireland.
  6. 1st European Im-Patient Conference, Invited Panel Facilitator, 17 October 2018, London, United Kingdom.
  7. Children’s Chronic Arthritis Association (CCAA) Family Support Weekend, Invited Speaker, 29 September 2018, Castleton, United Kingdom.
  8. Leeds Children’s Hospital PPI Research Forum, Invited Joint Speaker, 23 August 2018, Leeds, United Kingdom.
  9. 1st Manchester Digital Epidemiology Summer School, Invited Speaker, 19 July 2018, Manchester, United Kingdom.
  10. 4th iCAN Research and Advocacy Summit, Invited Speaker, 09-13 July 2018, Edinburgh, United Kingdom.
  11. National Rheumatoid Arthritis Society (NRAS) Bolton Rheumatoid Arthritis Support Group (BRASG) Meeting, Guest Speaker, 05 June 2018, Bolton, United Kingdom.
  12. European Network of Fibromyalgia Associations (ENFA) General Assembly, Invited Participant, 12 May 2018, Attard, Malta.
  13. ME, CFS and Fibromyalgia Alliance Malta VO/818 and European Network of Fibromyalgia Associations (ENFA) Conference, Invited Speaker, 12 May 2018, Attard, Malta.
  14. ME, CFS and Fibromyalgia Alliance Malta VO/818 and European Network of Fibromyalgia Associations (ENFA) Parliamentary Session, Invited Participant, 11 May 2018, Valletta, Malta.
  15. Arthritis Research UK Challenge Call Strategic Workshop, Invited Participant, 09 April 2018, London, United Kingdom.
  16. University of Central Lancashire (UCLAN) Centre for Children and Young People’s Participation Seminar, Invited Speaker, 21 March 2018, Preston, United Kingdom.
  17. The Hospital for Sick Children (SickKids) Child Health Evaluative Sciences Research Group Seminar, Invited Speaker, 05 March 2018, Toronto, Ontario, Canada.
  18. Glasgow Caledonian University School of Health and Life Sciences Research Seminar, Invited Speaker, 07 February 2018, Glasgow, United Kingdom.
  19. University of Bradford Faculty of Health Studies, Invited Speaker, 29 January 2018, Bradford, United Kingdom.
  20. NIHR Manchester Clinical Research Facility Young Person’s Advisory Group Inaugural Meeting, Invited Speaker, 02 December 2017, Manchester, United Kingdom.
  21. 6th Children’s Research Network for Ireland and Northern Ireland Conference,  Invited Speaker, 29-30 November 2017, Dublin, Ireland.
  22. INVOLVE at 21 Conference, Invited Speaker, 28 November 2017, London, United Kingdom.
  23. The University of Manchester’s Child Health Research Network’s Workshop on Greater Manchester Devolution, Invited Speaker, 20 November 2017, Manchester, United Kingdom.
  24. 14th Annual eyeforpharma Patient Summit Europe, Panellist, 19-20 October 2017, London, United Kingdom.
  25. 8th EULAR Brussels Conference: The future of health research and innovation after Horizon 2020, Invited Delegate, 17 October 2017, Brussels, Belgium.
  26. 24th European Paediatric Rheumatology Congress (PReS), Invited Speaker, 14-17 September 2017, Athens, Greece.
  27. 16th European Network for Children with Arthritis (ENCA) Conference, Invited Speaker, 14-17 September 2017, Athens, Greece.
  28. Office for Life Sciences and NHS England meeting to discuss the use of patient data in research, Invited Patient Research Ambassador, 28 July 2017, London, United Kingdom.
  29. 18th EULAR Annual European Congress of Rheumatology PARE session: Latest advances in the treatment and management of psoriatic arthritis and the latest news on the use of biosimilars in RMDs, Invited Session Chair, 16 June 2017, Madrid, Spain.
  30. Library and Information Health Network North West (LIHNN) / Health Care Libraries Unit (HCLU) briefing, Invited Speaker, 13 June 2017, St Helens, United Kingdom.
  31. Don’t Delay, Connect Today interview, Invited Speaker, 02 June 2017, London, United Kingdom.
  32. Tonic Life Communications interview about living with psoriatic arthritis, Invited Speaker, 21 April 2017, London, United Kingdom.
  33. Irish Children’s Arthritis Network transition workshop, Invited Contributor, 25 March 2017.
  34. Havas Lynx interview about living with juvenile idiopathic arthritis, Invited Speaker, 10 March 2017, Manchester, United Kingdom.
  35. Clinical Innovation and Partnering World 2017, Invited Speaker, 08 March 2017, London, United Kingdom.
  36. Diabetes UK Clinical Studies Groups lay and health care professional member induction, Invited Speaker, 27 February 2017, London, United Kingdom.
  37. BSPAR Conference 2016 Youth Matters! A YOURR project presentation by young people, Invited Q&A Session Co-chair, 29 November 2016, Manchester, United Kingdom.
  38. 1st Carion Fenn Foundation Health and Wellness Rare Disease Expo, Invited Panel Member, 24 September 2016, Ontario, Canada.
  39. 8th Conference of the European Paediatric Formulation Initiative, Invited Speaker, 20-22 September 2016, Lisbon, Portugal.
  40. Diabetes UK Clinical Studies Groups inaugural chairs’ forum, Invited Speaker, 08 September 2016, London, United Kingdom.
  41. Arthritis Research UK ‘Working with arthritis’ parliamentary reception, Invited Representative, 05 July 2016, London, United Kingdom.
  42. 17th EULAR Annual European Congress of Rheumatology, Invited Speaker, 08-11 June 2016, London, United Kingdom.
  43. 2nd Annual DPharm Europe Conference, Invited Speaker, 09-10 February 2016, London, United Kingdom.
  44. Arthritis Research UK all staff day, Invited Speaker, 15 December 2015, Loughborough, United Kingdom.
  45. 2nd The University of Manchester Centre for Primary Care patient hack day, Pitcher Buddy, 30 September 2015, Manchester, United Kingdom.
  46. Arthritis Research UK young people’s project, Invited Speaker, 28 February 2015, Frome, United Kingdom.

Invited contributions to webinars, online discussions and courses

  1. Navigating the ethics system for your research studies (#WhyWeDoResearch), Tweet Chat Host, 14 May 2018.
  2. EMEUNET 10 Days of Twitter Course, Course Co-leader, 07-18 May 2018.
  3. A day in the life of: Balancing a PhD, advocacy and long-term health conditions (#HealthTweetFeast as part of #LeedsDigi18), Host, 20 April 2018.
  4. Using technology to aid supported self- management of long-term conditions (#HealthTweetFeast as part of #LeedsDigi18), Tweet Chat Co-host, 19 April 2018.
  5. Health Tweet Feast, as part of Leeds Digital Festival, Co-ordinator, 16-22 April 2018.
  6. Combating the Stigma of Chronic Illnesses (#WEGOHealthChat), Tweet Chat Co-host, 13 March 2018.
  7. British Medical Journal’s Evidence-Based Nursing Online Journal Chat: Healthcare 2.0: Social media in healthcare (#ebnjc), Tweet Chat Co-host, 19 July 2017.
  8. The role of the patient research ambassador (#WhyWeDoResearch), Tweet Chat Co-host, 18 May 2017.
  9. A Week To Tweet Online Course, Course Leader, 16-23 February 2017.
  10. The patient research ambassador initiative (#WhyWeDoResearch), Tweet Chat Co-host, 17 May 2016.
  11. BrightTALK patient research ambassador initiative webinar, Guest Speaker, 18 January 2016.
  12. The role of patient research ambassadors (#PRATalk), Tweet Chat Panellist, 8 September 2015.
  13. Arthritis Research UK National Arthritis Week, Social Media Champion, 7-13 October 2013.

Facilitation and delivery of workshops and training events

  1. Effectively designing and presenting a poster, Facilitator, 05 April 2019, Prague, Czech Republic.
  2. Pharma’s perceptions of patients, Facilitator, 17 October 2018, London, United Kingdom.
  3. Let’s talk about JIA – Express yourself, Facilitator, 29 September 2018, Castleton, United Kingdom.
  4. Getting to grips with involving and engaging children, young people and families in research, Co-Facilitator, 23 August 2018, Leeds, United Kingdom.
  5. Choosing meaningful outcomes for research: Making sure young people have their say, Supporting Facilitator, 12 July 2018, Edinburgh, United Kingdom.
  6. Youth-identified needs in the transition from paediatric to adult care for children and youth with chronic and rare diseases, Co-Facilitator, 11 July 2018, Edinburgh, United Kingdom.
  7. Using social media to promote iCAN, your chapter and your projects, Co-Facilitator, 09 July 2018, Edinburgh, United Kingdom.
  8. Co-producing, evaluating and implementing information and support interventions for people living with long-term conditions, Co-Facilitator, 02 May 2018, Leeds, United Kingdom.
  9. Patient and public involvement (PPI) and communications training, Co-Facilitator, 11 April 2018, Leeds, United Kingdom.
  10. Hello iSMART, Facilitator, 13 January 2018, Liverpool, United Kingdom.
  11. Social media in research, Facilitator, 29 November 2017, Dublin, Ireland.
  12. Reaching out to patient: A digital patient engagement system informed by young people, Co-Facilitator, 18 November 2017, Liverpool, United Kingdom.
  13. Ensuring research really does involve the young person, Co-Facilitator, 08 November 2017, Manchester, United Kingdom.
  14. Consensus meeting for a future steroid induction regimen randomised controlled trial for young people with juvenile idiopathic arthritis, Co-Facilitator, 19 July 2017, Liverpool, United Kingdom.
  15. Patient and public involvement (PPI) and communications training, Co-Facilitator, 29 June 2017, Leeds, United Kingdom.
  16. The social media revolution: strategies to create and strengthen communication in a digital era (advanced level), Facilitator, 25 February 2017, Lisbon, Portugal.
  17. The social media revolution: strategies to create and strengthen communication in a digital era (beginners/intermediate level), Facilitator, 24 February 2017, Lisbon, Portugal.
  18. Using social media to deliver effective and engaging interactions, Facilitator, 22 October 2016, Retie, Belgium.
  19. Facilitating transition in young people with RMDs from child to adult, Co-Facilitator, 16 April 2016, Sofia, Bulgaria.
  20. How to set up a group for young people in your organisation, Facilitator, 15 April 2016, Sofia, Bulgaria.

Participation in workshops

  1. Speaking the same language: Improving communication, 02 November 2018, Dublin, Ireland.
  2. A new model, from drug to care, 16 October 2018, London, United Kingdom.
  3. Translating chronic pain creative writing workshop, 24 February 2018, Manchester, United Kingdom.
  4. How to influence policy and make a better world for people with RMDs, 17 February 2018, Brussels, Belgium.
  5. Don’t Delay, Connect Today in 2018 and beyond, 17 February 2018, Brussels, Belgium.
  6. Understanding the European policy landscape from an RMD perspective, 16 February 2018, Brussels, Belgium.
  7. Ethics of child and youth participation, 30 November 2017, Dublin, Ireland.
  8. Public private partnership in research and innovation, 17 October 2017, Brussels, Belgium.
  9. Enhancing self-management in young people using innovative and accessible technologies, 25 February 2017, Lisbon, Portugal.
  10. Working with volunteers, 22 October 2016, Retie, Belgium.
  11. Pitching your ideas, 22 October 2016, Retie, Belgium.
  12. #DesignForMSK workshop, 12 August 2016, Manchester, United Kingdom.
  13. The University of Manchester HQIP PROMs/PREMs development workshop, 30 January 2016, Manchester, United Kingdom.
  14. Inventid products for people with musculoskeletal conditions, 08 December 2015, Manchester, United Kingdom.
  15. What steps can organisations take to help people with RMDs self-manage? 25 April 2015, Dublin, Ireland.
  16. Establishing the Young PARE network, 25 April 2015, Dublin, Ireland.
  17. Young PARE strategy – from plan to action, 24 April 2015, Dublin, Ireland.
  18. The role of organisations in the development of health apps and e-health services for people with RMDs, 24 April 2015, Dublin, Ireland.
  19. Stratified and experimental medicine workshop, 28 March 2013, London, United Kingdom.

Participation in regional, national and international meetings

  1. University of Leeds School of Healthcare PGR Conference, 06 November 2018, Leeds, United Kingdom.
  2. University College Dublin’s Facilitating a collaborative approach to arthritis and rheumatic disease research conference, 02 November 2018, Dublin, Ireland.
  3. 1st European Im-Patient Conference, 17 October 2018, London, United Kingdom.
  4. 15th Annual Patient Summit Europe, 16-17 October 2018, London, United Kingdom.
  5. Children’s Chronic Arthritis Association (CCAA) Family Support Weekend, 29 September 2018, Castleton, United Kingdom.
  6. Leeds Children’s Hospital PPI Research Forum, 23 August 2018, Leeds, United Kingdom.
  7. 4th iCAN Research and Advocacy Summit, 09-13 July 2018, Edinburgh, United Kingdom.
  8. 19th EULAR Annual European Congress of Rheumatology, 13-16 June 2018, Amsterdam, The Netherlands.
  9. National Rheumatoid Arthritis Society (NRAS) Bolton Rheumatoid Arthritis Support Group (BRASG) Meeting, 05 June 2018, Bolton, United Kingdom.
  10. European Network of Fibromyalgia Associations (ENFA) General Assembly, 12 May 2018, Attard, Malta.
  11. ME, CFS and Fibromyalgia Alliance Malta VO/818 and European Network of Fibromyalgia Associations (ENFA) Conference, 12 May 2018, Attard, Malta.
  12. ME, CFS and Fibromyalgia Alliance Malta VO/818 and European Network of Fibromyalgia Associations (ENFA) Parliamentary Session, 11 May 2018, Valletta, Malta.
  13. Realist Methodology in Health and Care Research Conference, 14 April 2018, Bangor, United Kingdom.
  14. Researching Patient Feedback for the NHS, 28 March 2018, Manchester, United Kingdom.
  15. Be Curious 2018, 17 March 2018, Leeds, United Kingdom.
  16. 21st EULAR Annual European Conference of PARE, 15-18 February 2018, Brussels, Belgium.
  17. GenerationR Liverpool Young Person’s Advisory Group Meeting, 13 January 2018, Liverpool, United Kingdom.
  18. NIHR Manchester Clinical Research Facility Young Person’s Advisory Group Inaugural Meeting, 02 December 2017, Manchester, United Kingdom.
  19. 6th Children’s Research Network for Ireland and Northern Ireland Conference, 29-30 November 2017, Dublin, Ireland.
  20. INVOLVE at 21 Conference, 28 November 2017, London, United Kingdom.
  21. The University of Manchester’s Child Health Research Network’s Workshop on Greater Manchester Devolution, 20 November 2017, Manchester, United Kingdom.
  22. GenearionR Liverpool and Nottingham Young Person’s Advisory Group Meeting, 18 November 2017, Liverpool, United Kingdom.
  23. NHS Health Research Authority’s Meeting on the Ethical Issues of Research Involving Children, 08 November 2017, Manchester, United Kingdom.
  24. Digital Health Generation Health 2.0 Symposium, 03 November 2017, Salford, United Kingdom.
  25. University of Leeds School of Healthcare Postgraduate Research Conference, 01 November 2017, Leeds, United Kingdom.
  26. Fibromyalgia Action UK Annual Meeting, 28-29 October 2017, Paisley, Glasgow, United Kingdom.
  27. 3rd Leeds Children’s Hospital Conference, ‘In Your Shoes’, 22 October 2017, London, United Kingdom.
  28. 14th Annual eyeforpharma Patient Summit Europe, 19-20 October 2017, London, United Kingdom.
  29. 8th EULAR Brussels Conference, 17 October 2017, Brussels, Belgium.
  30. 3rd EULAR Network of Patient Research Partners Meeting, 06-08 October 2017, Amsterdam, The Netherlands.
  31. BSPAR Conference 2017, 04-05 October 2017, Sheffield, United Kingdom.
  32. 24th European Paediatric Rheumatology Congress (PReS), 14-17 September 2017, Athens, Greece.
  33. 16th European Network for Children with Arthritis (ENCA) Conference, 14-17 September 2017, Athens, Greece.
  34. NHS Health and Care Innovation Expo 2017, 11-12 September 2017, Manchester, United Kingdom.
  35. 3rd iCAN Research and Advocacy Summit, 10-14 July 2017, Orlando, Florida, United States of America.
  36. 1st European Patients’ Forum summer training course for young patient advocates, 03-05 July 2017, Vienna, Austria.
  37. 18th EULAR Annual European Congress of Rheumatology, 14-17 June 2017, Madrid, Spain.
  38. NICE Annual Conference 2017,  18-19 May 2017, Liverpool, United Kingdom.
  39. 20th EULAR Annual European Conference of PARE, 23–26 February 2017, Cascais, Lisbon, Portugal.
  40. 7th Annual University of Leeds Postgraduate Research Conference, 05 December 2016, Leeds, United Kingdom.
  41. BSPAR Conference 2016, 29-30 November 2016, Manchester, United Kingdom.
  42. Fostering and sustaining UK, multidisciplinary, family-focused care across the life-course: a white rose collaboration in long-term condition management, 07-08 November 2016, Leeds, United Kingdom.
  43. University of Leeds School of Healthcare Postgraduate Research Conference, 19 October 2016, Leeds, United Kingdom.
  44. NIHR Patient Research Ambassador Initiative Project Operational Group Meeting, 29 September 2016, London, United Kingdom.
  45. NHS Health and Care Innovation Expo 2016, 07 September 2016, Manchester, United Kingdom.
  46. 2nd iCAN Research and Advocacy Summit, 27 June – 02 July 2016, Barcelona, Spain.
  47. NIHR Join Dementia Research Champions and Patient Research Ambassadors Joint Summer Meeting, 22 June 2016, London, United Kingdom.
  48. EULAR Network of Patient Research Partners Meeting, 09 June 2016, London, United Kingdom.
  49. 17th EULAR Annual European Congress of Rheumatology, 08-11 June 2016, London, United Kingdom.
  50. 19th EULAR Annual European Conference of PARE, 15-17 April 2016, Sofia, Bulgaria.
  51. 2nd EULAR Network of Patient Research Partners Meeting, 22-23 October 2015, Amsterdam, The Netherlands.
  52. 1st Leeds Children’s Hospital Conference, 16 October 2015, Leeds, United Kingdom.
  53. BSPAR Conference 2015, 24-25 September 2015, Belfast, United Kingdom.
  54. Healthtalk Young People and Primary Care Young Persons’ Advisory Panel Meeting, 24 August 2015, Oxford, United Kingdom.
  55. 16th EULAR Annual European Congress of Rheumatology, 10-13 June 2015, Rome, Italy.
  56. 18th EULAR Annual European Conference of PARE, 24-26 April 2015, Dublin, Ireland.
  57. EULAR Task Force on Developing Standards and Recommendations for Transitional Care Management for Adolescents and Young People with Juvenile Idiopathic Arthritis, 20-21 April 2015, Zurich, Switzerland.
  58. Healthtalk Young People and Primary Care Advisory Panel Meeting, 24 March 2015, Oxford, United Kingdom.
  59. NIHR INVOLVE Conference, 26-27 November 2014, Birmingham, United Kingdom.
  60. EULAR Task Force on Developing Standards and Recommendations for Transitional Care Management for Adolescents and Young People with Juvenile Idiopathic Arthritis, 7-8 October 2014, Zurich, Switzerland.
  61. BSPAR Conference 2014, 25-26 September 2014, Leeds, United Kingdom.
  62. BSPAR Parent Group Meeting, 20 March 2014, London, United Kingdom.
  63. MCRN/Arthritis Research UK Paediatric Rheumatology Consumer Research Meeting, 21 February 2013, London, United Kingdom.
  64. Science, Ethics and Society Seminar, 19 February-22 March 2013, Manchester, United Kingdom.
  65. Manchester Medical Research Student Society Introduction to Academic Medicine, 13 November 2012, Manchester, United Kingdom.
  66. Central Manchester University Hospitals NHS Foundation Trust Rheumatology Consultation Day, 09 September 2010, Manchester, United Kingdom.

Grants and bursaries

  1. Stones, S.R. (2019). Postgraduate research student training support fund 2018/2019. £1,000.00, School of Healthcare, Faculty of Medicine and Health, University of Leeds.
  2. Stones, S.R. (2018). School of Healthcare PhD studentship 2018/2019. £19,037.00, School of Healthcare, Faculty of Medicine and Health, University of Leeds.
  3. Knapp, P., Martin-Kerry, J., Phillips, B., Blower, S., Togerson, D., Swallow, V., Dimitri, P., Marshman, Z., Stones, S.R., Kellar, I., Curtis, P., Higgins, S., Mills, N. (2018). Identifying and understanding the most effective ways to inform children and young people (CYP) with long-term health conditions about technology interventions to promote optimum healthcare. £14,994.90, University of York Research Priming.
  4. Stones, S.R. (2018). 19th Annual European Congress of Rheumatology Travel Bursary. €350.00, European League Against Rheumatism.
  5. Stones, S.R. (2018). Postgraduate research student training support fund 2017/2018. £1,000.00, School of Healthcare, Faculty of Medicine and Health, University of Leeds.
  6. Stones, S.R. (2017). School of Healthcare PhD studentship 2017/2018. £18,803.00, School of Healthcare, Faculty of Medicine and Health, University of Leeds.
  7. Balazova, P., Andersen, J., Boyd, P., Olsder, W., Ostuzzi, S., Stones, S.R. & Wilhelmer, T., on behalf of the EULAR Young PARE working group. (2017). Growing stronger together: Implementing EULAR Young PARE’s strategy. €19,740.00, European League Against Rheumatism.
  8. Stones, S.R. (2017). 18th Annual European Congress of Rheumatology Travel Bursary. €350.00, European League Against Rheumatism.
  9. Eleftheriou, D., Morris, S., Sen, D., Wedderburn, L., Stones, S.R., Lee, M., Tattersall, R., Chaplin, H., Hailes, S. & Ioannou, J. (2016). Improving delivery of care and self management for young people with arthritis. £152,186.93, Arthritis Research UK/Pfizer Health Services Research Call.
  10. Stones, S.R. (2017). Postgraduate research student training support fund 2016/2017. £1,000.00, School of Healthcare, Faculty of Medicine and Health, University of Leeds.
  11. Stones, S.R. (2016). School of Healthcare PhD studentship 2016/2017. £18,546.00, School of Healthcare, Faculty of Medicine and Health, University of Leeds.
  12. Baildam, E., Foster, H., Jones, A., Peak, M., Ramanan, A., Rooney, M., Young, B., Beresford, M., Gillard, H., McErlane, F. & Stones, S.R. (2015). HTA – 14/167/01: Steroid induction regimen for juvenile idiopathic arthritis (JIA). £273,179.00, NIHR Evaluation, Trials and Studies Health Technology Assessment Funding.
  13. Stones, S.R. (2015). 16th Annual European Congress of Rheumatology Travel Bursary. €350.00, European League Against Rheumatism.
  14. Swallow, V., Majeed-Ariss, R. & Stones, S.R. (2014). The views of 11-24 year olds with JIA and health peers on actual and potential use of health- related mobile applications: a qualitative study and survey. £4,000.00, NIHR Manchester Musculoskeletal Biomedical Research Unit Small Grants Funding.
  15. Swallow, V., Baildam, E., Chieng, A., Douglas, S., Foster, H., Hall, A., McDonagh, J., Stones, S.R., Thompson, W. & Wyllie, R. (2013). Fostering a Manchester-based, interdisciplinary research programme on mobile technologies for young people with long-term conditions to promote optimum self-management. £14,099.00, The University of Manchester Pump Priming Award.

Seminars and teaching

  1. All is not as it seems: Unravelling the complexity of chronic conditions in children, young people and their families on HECS2186 Young People’s Development and Health, BSc Nursing (Child), March 2018, University of Leeds, Leeds, United Kingdom, invited by Dr. Linda Milnes and Professor Veronica Swallow.  Doi: 10.13140/RG.2.2.26765.23528/1.
  2. The creaking epidemic on Physiotherapy BSc (Hons) Programme, January-March 2018, Faculty of Health Studies, University of Bradford, Bradford, United Kingdom, invited by Dr. Lisa Edwards. Doi: 10.13140/RG.2.2.27734.34880.
  3. Introducing iSMART, April 2017, School of Healthcare Maternal, Child, and Family Health Research Group, University of Leeds, Leeds, United Kingdom, invited by Professor Linda McGowan and Professor Veronica Swallow. Doi: 10.13140/RG.2.2.34340.68486/1.
  4. Beneath the surface: Unravelling the complexity of long-term, chronic conditions on HECS2186 Young People’s Development and Health, BSc Nursing (Child), March 2017, University of Leeds, Leeds, United Kingdom, invited by Professor Veronica Swallow. Doi: 10.13140/RG.2.2.17241.11360.
  5. Arthritis – it’s not just an old person’s disease, March 2016, Centre for Musculoskeletal Research, The University of Manchester, Manchester, United Kingdom, invited by Dr. Suzan Verstappen. Doi: 10.13140/RG.2.2.31941.45289.
  6. The importance of transitional care for young people with long-term conditions on HECS2186 Young People’s Development and Health, BSc Nursing (Child), February 2016, University of Leeds, Leeds, United Kingdom, invited by Dr. Veronica Swallow.
  7. Transition from child to adult care on NURS21060 Supportive Care Across the Life Continuum, BNurs Children’s Nursing, December 2014, The University of Manchester, Manchester, United Kingdom, invited by Dr. Veronica Swallow and Dr. Linda Milnes.

Publications

Peer-reviewed publications

  1. Sherratt, F.C., Roper, L., Stones, S.R., McErlane, F., Peak, M., Beresford, M.W., Foster, H., Ramanan, A.V., Rooney, M., Baildam, E. & Young, B. (2018). Protective parents and permissive children: what qualitative interviews with parents and children can tell us about the feasibility of juvenile idiopathic arthritis trials. Pediatric Rheumatology 16:76. Doi: 10.1186/s12969-018-0293-2.
  2. Sheridan, R., Martin-Kerry, J., Watt, I., Higgins, S., Stones, S.R., Horton Taylor, D. & Knapp, P. (2018). User testing digital, multimedia information to inform children, adolescents and their parents about healthcare trials. Journal of Child Health Care. Doi: 10.1177/1367493518807325.
  3. Alunno, A., Carubbi, F., Stones, S.R., Gerli, R., Giacomelli, R. & Baraliakos, X. (2018). The impact of fibromyalgia in spondyloarthritis: From classification criteria to outcome measures. Frontiers in Medicine 5: 290. Doi: 10.3389/fmed.2018.00290.
  4. Waite-Jones, J.M., Majeed-Ariss, R., Smith, J., Stones, S.R., Van Rooyen, V. & Swallow, V. (2018). Young people’s, parents’, and professionals’ views on required components of mobile apps to support self-management of juvenile arthritis: Qualitative study. JMIR Mhealth Uhealth 6(1): e25. Doi: 10.2196/mhealth.9179.
  5. Foster, H.E., Minden, K., Clemente, D., Leon, L., McDonagh, J.E., Kamphuis, S., Berggren, K., van Pelt, P., Wouters, C., Waite-Jones, J., Tattersall, R., Wyllie, R., Stones, S.R., Martini, A., Constantin, T., Schalm, S., Fidanci, B., Erer, B., Dermikaya, E., Ozen, S. & Carmona, L. (2017). EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases. Annals of the Rheumatic Diseases 76(4): 639-646. Doi: 10.1136/annrheumdis-2016-210112.
  6. Majeed-Ariss, R., Baildam, E., Campbell, M., Chieng, A., Fallon, D., Hall, A.,McDonagh, J.E., Stones, S.R., Thomson, W. & Swallow, V. (2015). Apps and adolescents: a systematic review of adolescent’s use of mobile phone and tablet apps that support personal management of their chronic or long-term physical conditions. Journal of Medical Internet Research 17(12): e287. Doi: 10.2196/jmir.5043.

Book chapters

  1. Douglas, S. & Stones, S.R. (2018). Foreword: Parent and young person involvement in research—a consumer perspective. In: Foster, H.E. & Broagn, P.A (eds). Paediatric Rheumatology 2nd Edition. Oxford, United Kingdom: Oxford University Press. Doi: 10.1093/med/9780198738756.001.0001.

Magazine articles

  1. Stones, S.R. (2018). Young people get arthritis too. Biological Sciences Review 30(4): 2-5.

Editorials and opinion articles

  1. Stones, S.R. (2018). Nothing about us without us: The importance of involving young people in healthcare research, from the bench to the bedside. International Journal of Pharmaceutics 536(2): 524-525. Doi: 10.1016/j.ijpharm.2017.08.058.
  2. Stones, S.R. & Smith, J. (2018). Social media supremacy: a force of change paving the way for the next generation of healthcare and research. Evidence-Based Nursing 21(1): 2-3. Doi: 10.1136/eb-2017-102846.
  3. Stones, S.R. (2017). Making the dream a reality: the evolving landscape of family-focused research inspired by empowered patients and their families. Journal of Family Nursing 23(3): 307-318. Doi: 10.1177/1074840717716986.
  4. Stones, S.R. (2017). Social media sites that encourage peer support among young people with rheumatic conditions – Web review: Arthur’s Place. Nursing Children and Young People 29(4): 16. Doi: 10.7748/ncyp.29.4.16.s18.
  5. Stones, S.R. (2017). Social media sites that encourage peer support among young people with rheumatic conditions – Web review: Your Rheum. Nursing Children and Young People 29(4): 16. Doi: 10.7748/ncyp.29.4.16.s17.
  6. Stones, S.R., Milnes, L.J., McGowan, L. & Swallow, V.M. (2017). Self-management interventions for children aged four to 11 living with long-term, chronic conditions and their families: a realist synthesis protocol. PROSPERO 2017: CRD42017055884. Available from: http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42017055884.

Conference proceedings and poster presentations

  1. Studenic, P., Stones, S.R., Alunno, A., Ritschl, V. & Nikiphorou, E. (2018). Social Media Use for Health-Related Purposes By People with Rheumatic Diseases. Poster presentation at: Annual Meeting of the Austrian Society for Rheumatology and Rehabilitation (Österreichische Gesellschaft für Rheumatologie & Rehabilitation), 29 November-01 December 2018, Vienna, Austria.
  2. Sherratt, F.C., Eaton, S., Allin, B.S., Bagley, H., Stones, S.R., Preston, J., Walker, E., Young, B. & Hall, N. (2018). Improving core outcome set development for children and young people (CYP): Learning from a case study in acute appendicitis and consultation with an international group of CYP. Poster presentation at: 7th COMET Initiative Meeting, 15-16 November 2018, Amsterdam, The Netherlands.
  3. Studenic P., Alunno A., Stones S.R., Ritschl V. & Nikiphorou E. (2018). Social Media Use for Health-Related Purposes By People with Rheumatic and Musculoskeletal Diseases – Results of a Global Survey. Arthritis & Rheumatology 70 (Suppl 9). Available from: http://acrabstracts.org/abstract/social-media-use-for-health-related-purposes-by-people-with-rheumatic-and-musculoskeletal-diseases-results-of-a-global-survey/.
  4. Ainsworth, J.S., Ainsworth, S., Challinor, R., Rowe, M., Preston, J. & Stones, S.R. (2018). Things get solved when you become involved: A case study of RAiISE, a young person and family-led research initiative to improve education support for young people with chronic conditions. Poster presentation at: 14th Annual UK Clinical Research Facilities Network Conference, 12-13 July 2018, Leeds, United Kingdom. Doi: 10.13140/RG.2.2.28269.69608.
  5. Stones, S.R. on behalf of iSMART Research Group (2018). 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. Annals of the Rheumatic Diseases 77(Suppl 2): 1797. Doi: 10.1136/annrheumdis-2018-eular.2994.
  6. Stones, S.R. on behalf of Young PARE Working Group (2018). A week to tweet: Findings from Young PARE’s online course for Twitter novices. Annals of the Rheumatic Diseases 77(Suppl 2): 55. Doi: 10.1136/annrheumdis-2018-eular.1948.
  7. Stones, S.R., Verstappen, S. & Cruickshank, S. (2017). 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. Rheumatology 56 (Suppl 7): 050. Doi: 10.1093/rheumatology/kex390.050.
  8. Stones, S.R., Janson, D. & Wright, C. (2017). The essential role of consumers in clinical and health services research: best practice examples from the paediatric rheumatology clinical studies group consumer representatives. Rheumatology 56 (Suppl 7): 068. Doi: 10.1093/rheumatology/kex390.068.
  9. Stones, S.R. & Wright, C. (2017). The critical role of patients, parents and carers in guiding the paediatric rheumatology research strategy for the United Kingdom through the clinical studies group. Research Involvement and Engagement 3(Suppl 1): P18. Doi: 10.1186/s40900-017-0075-x.
  10. Stones, S.R. (2017). 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. Poster presentation at: University of Leeds School of Healthcare Postgraduate Research Conference, 01 November 2017, Leeds, United Kingdom. Doi: 10.13140/RG.2.2.11792.92168.
  11. Stones, S.R., Swallow, V., Milnes, L. & McGowan, L. (2017). Identifying the self-management needs of children with rheumatic and musculoskeletal diseases and their families: an exploratory sequential mixed methods study proposal. Rheumatology 56 (Suppl 6): 049. Doi: 10.1093/rheumatology/kex356.033.
  12. Waite-Jones, J., Swallow, V., Smith, J., Stones, S.R., Majeed-Ariss, R. & Van Rooyen, V. (2017). Developing a mobile-app to aid young people’s self-management of chronic rheumatic disease: a qualitative study. Rheumatology 56 (Suppl 6): 017. Doi: 10.1093/rheumatology/kex356.001.
  13. Stones, S.R. (2017). Developing, evaluation and implementing smartphone applications for young people living with rheumatic and musculoskeletal diseases: a scoping review of empirical research. Pediatric Rheumatology 15(Suppl 2): P268. Doi: 10.1186/s12969-017-0186-9.
  14. Ainsworth, S., Ainsworth, J., Preston, J., Stones, S.R., Challinor, R. & Rowe, M. (2017). Introducing RAiISE – Raising awareness of invisible illnesses in schools and education. Pediatric Rheumatology 15(Suppl 2): P113. Doi: 10.1186/s12969-017-0185-x.
  15. Sherratt, F.C., Roper, L., Baildam, E.M., Beresford, M.W., Stones, S.R., Ramanan, A., Foster, H., McErlane, F., Rooney, M., Peak, M. & Young, B. (2017). Families’ views on the feasibility of a corticosteroid trial in JIA: a qualitative study. Pediatric Rheumatology 15(Suppl 2): P248. Doi: 10.1186/s12969-017-0186-9.
  16. Stones, S.R. & Wright, C. on behalf of Lay/Consumer CSG Representatives. (2017). Involving patients, parents and carers in paediatric rheumatology research: best practice examples from lay representatives of the United Kingdom’s clinical studies group. Pediatric Rheumatology 15(Suppl 2): P109. Doi: 10.1186/s12969-017-0185-x.
  17. Stones, S.R., Ainsworth, S., Ainsworth, S., Challinor, R., Gamble, C., McGowan, L., Milnes, L., Preston, J. & Swallow, V. (2017). Self-management of chronic disease in childhood: the iSMART study. Poster presentation at: 3rd iCAN Research and Advocacy Summit, 10-14 July 2017, Orlando, Florida, United States of America. Doi: 10.13140/RG.2.2.32862.33603.
  18. Preston, J., Ainsworth, S., Challinor, R. & Stones, S.R. (2017). RAiISE: Raising awareness of invisible illnesses in schools and education. Poster presentation at: 3rd iCAN Research and Advocacy Summit, 10-14 July 2017, Orlando, Florida, United States of America. Doi: 10.13140/RG.2.2.11713.04964.
  19. Ainsworth, S., Preston, J., Challinor, R. & Stones, S.R. (2017). GenerationR: Young people improving research across England. Poster presentation at: 3rd iCAN Research and Advocacy Summit, 10-14 July 2017, Orlando, Florida, United States of America. Doi: 10.13140/RG.2.2.28563.17446.
  20. Preston, J., Dicks, P., Gaillard, S., Nafría, B., Ainsworth, S., Challinor, R., Main, S. & Stones, S.R. (2017). Empowering young people and families to contribute to paediatric clinical research via the European YPAG network (eYPAGnet). Poster presentation at: 3rd iCAN Research and Advocacy Summit, 10-14 July 2017, Orlando, Florida, United States of America. Doi: 10.13140/RG.2.2.34435.20005.
  21. Sheridan, R., Martin-Kerry, J., Preston, J., Stones, S.R., Challinor, R. & Knapp, P. on behalf of the TRECA Study Advisory Group and the TRECA Study Patient and Parent Advisory Group. (2017). Changing the way children, adolescents and their families are informed about clinical research through novel multimedia information resources. Poster presentation at: 13th Annual UK Clinical Research Facilities Network Conference, 06-07 July 2017, Glasgow, United Kingdom.
  22. Stones, S.R., Cruickshank, S. & Verstappen, S.M.M. (2017). The development and evaluation of an interactive health communication application to educate and empower young people living with juvenile idiopathic arthritis: a pilot study. Annals of the Rheumatic Diseases 76 (Suppl 2): 139. Doi: 10.1136/annrheumdis-2017-eular.1025.
  23. Stones, S.R., Bull, S.L. & Becerra, S. (2017). An exploration of lived experiences amongst adults with rheumatoid arthritis using an online research community platform: a pilot study. Annals of the Rheumatic Diseases 76 (Suppl 2): 119. Doi: 10.1136/annrheumdis-2017-eular.1029.
  24. Cresswell, K., Parson, S., Stones, S.R., McDonagh, J.E., Thomson, W. & Lunt, L. (2017). Your Rheum – Giving young people a voice in rheumatology research. Annals of the Rheumatic Diseases 76 (Suppl 2): 190. Doi: 10.1136/annrheumdis-2017-eular.5807.
  25. Andersen, J., Balazova, P., Boyd, P., Olsder, W., Ostuzzi, S., Papastavrou, T., Stones, S.R., Wilhelmer, T., Van Nieuwkoop, L., Caeyers, N. & Klett, F. (2017). Growing stronger together: implementing EULAR Young PARE’s strategy. Annals of the Rheumatic Diseases 76 (Suppl 2): 1552. Doi: 10.1136/annrheumdis-2017-eular.4891.
  26. Andersen, J., Balazova, P., Olsder, W., Ostuzzi, S., Papastavrou, D., Stones, S.R., Wilhelmer, T. & Boyd, P. (2017). The importance of face-to-face networks: findings from the 2nd EULAR Young PARE conference, ‘Change the future’. Annals of the Rheumatic Diseases 76 (Suppl 2): 1557. Doi: 10.1136/annrheumdis-2017-eular.3203.
  27. Sherratt, F., Roper, L., Baildam, E., Peak, M., McErlane, F., Stones, S.R. & Young, B. (2017). Family perspectives on the feasibility of a corticosteroid induction regimen randomised controlled trial in juvenile idiopathic arthritis: results of a qualitative study. Trials 18 (Suppl 1): P384.
  28. Andersen, J., Stones, S.R., Balazova, P., Van Nieuwkoop, L., Papastavrou, T., Caeyers, N. & Klett, F. (2016). EULAR Young PARE: The voice of young people with rheumatic diseases across Europe. Annals of the Rheumatic Diseases 75 (Suppl 2): 1325-1326. Doi: 10.1136/annrheumdis-2016-eular.4979.
  29. Stones, S.R. & MyJIA Expert Advisory Group. (2016). Juvenile idiopathic arthritis: it’s not just an old person’s disease. Annals of the Rheumatic Diseases 75 (Suppl 2): 1324. Doi: 10.1136/annrheumdis-2016-eular.1160.
  30. Stones, S.R. (2016). How innovative technologies can support individuals to better self-manage their conditions. Annals of the Rheumatic Diseases 75 (Suppl 2): 23. Doi: 10.1136/annrheumdis-2016-eular.1167.
  31. Majeed-Ariss, R., Fallon, D., Hall, A., McDonagh, J.E., Stones, S.R. & Swallow, V. (2015). Health theory in mobile technology apps supporting young people’s long-term condition/s management: a systematic review. European Health Psychologist 17(S): 682. Available from: http://www.ehps.net/ehp/index.php/contents/article/view/1162.
  32. Stones, S.R., Majeed, R., Hall, A. & Swallow, V. (2015). Involvement of children and young people with long-term conditions in the development of mobile app technology to promote disease self-management. Annals of the Rheumatic Diseases 74 (Suppl 2): 163-164. Doi: 10.1136/annrheumdis-2015-eular.1450.
  33. Stones, S.R. & Wright, C. (2015). The top concerns of children and young people living with JIA. Annals of the Rheumatic Diseases 74 (Suppl 2): 181. Doi: 10.1136/annrheumdis-2015-eular.1455.
  34. Stones, S.R., Majeed-Ariss, R. & Swallow, V. (2014). Developing mobile applications for and with young people with long-term conditions learning to share their healthcare with professionals: a young person and family-led approach. Poster presentation at: NIHR INVOLVE Conference, 26-27 November 2014, Birmingham, United Kingdom. Doi: 10.13140/RG.2.1.2761.4566.

Oral presentations

  1. Stones, S.R. (2018). Nothing about me, without me: Driving innovation with the patient community. Oral presentation at: Actelion Global Scientific Information (GSI) Lunch Talk, 06 December 2018, Basel, Switzerland.
  2. Stones, S.R. (2018). Digging for nuggets of gold: Developing a self-and shared-management framework to support children with arthritis and their families using a realist approach. Oral presentation at: University of Leeds School of Healthcare Postgraduate Research Conference, 06 November 2018, Leeds, United Kingdom. Available from: http://doi.org/10.13140/RG.2.2.12424.06403.
  3. Stones, S.R. (2018). Patient and public involvement in research: Two sides of the same coin. Oral presentation at: University College Dublin’s Facilitating a collaborative approach to arthritis and rheumatic disease research conference, 02 November 2018, Dublin, Ireland. Available from: http://www.slideshare.net/SimonStones/patient-and-public-involvement-in-research-two-sides-of-the-same-coin.
  4. Wright, C., Stones, S.R., Parker, D. & Vale, S. (2018). Making research opportunities visible to young people with JIA and their families. Oral presentation at: British Society for Paediatric and Adolescent Rheumatology Conference, JIA Topic Specific Group Meeting, 18 October 2018, Southampton, United Kingdom. Available from: http://doi.org/10.13140/RG.2.2.26355.37924.
  5. Stones, S.R. (2018). JIA journeys. Oral presentation at: Children’s Chronic Arthritis Association (CCAA) Family Support Weekend, 29 September 2018, Castleton, United Kingdom. Available from: http://www.slideshare.net/SimonStones/jia-journeys.
  6. Nightingale, R. & Stones, S.R. (2018). Getting to grips with involving and engaging children, young people and families in research. Oral presentation at: Leeds Children’s Hospital Research Forum, 23 August 2018, Leeds, United Kingdom. Available from: http://www.slideshare.net/SimonStones/getting-to-grips-with-involving-and-engaging-children-young-people-and-families-in-research.
  7. Stones, S.R. (2018). Why fit in when you were born to stand out! Oral presentation at: 4th iCAN Research and Advocacy Summit, 09 July 2018, Edinburgh, United Kingdom. Available from: http://www.slideshare.net/SimonStones/why-fit-in-when-you-were-born-to-stand-out-106041227.
  8. Stones, S.R. (2018). It’s more than just aches and pains. Oral presentation at: NRAS Bolton Rheumatoid Arthritis Support Group (BRASG) Meeting, 05 June 2018, Bolton, United Kingdom. Available from: http://www.slideshare.net/SimonStones/its-more-than-just-aches-and-pains.
  9. Stones, S.R. (2018). Stumbling through the fog: A lived experience of fibromyalgia. Oral presentation at: ME, CFS and Fibromyalgia Alliance Malta VO/818 and European Network of Fibromyalgia Associations (ENFA) Conference, 12 May 2018, Attard, Malta. Available from: http://www.slideshare.net/SimonStones/stumbling-through-the-fog-a-lived-experience-of-fibromyalgia.
  10. Stones, S.R. (2018). In the driving seat: Health care and research led for, and by young people. Oral presentation at: University of Central Lancashire (UCLAN) Centre for Children and Young People’s Participation Seminar Series, 21 March 2018, Preston, United Kingdom. Available from: http://www.slideshare.net/SimonStones/in-the-driving-seat-health-care-and-research-led-for-and-by-young-people.
  11. Stones, S.R. (2018). 8766 days to change a life. Oral presentation at: The Hospital for Sick Children (SickKids) Child Health Evaluative Sciences (CHES) Research Group Seminar, 05 March 2018, Toronto, Ontario, Canada. Available from: http://www.slideshare.net/SimonStones/8766-days-to-change-a-life/SimonStones/8766-days-to-change-a-life.
  12. Stones, S.R. (2018). Tell me and I forget, teach me and I remember, involve me and I learn. Oral presentation at: Glasgow Caledonian University School of Health and Life Sciences Research Seminar, 07 February 2018, Glasgow, United Kingdom. Available from: http://www.slideshare.net/SimonStones/tell-me-and-i-forget-teach-me-and-i-remember-involve-me-and-i-learn.
  13. Stones, S.R. (2017). Your voice, your story, your life: You matter. Oral presentation at: NIHR Manchester Clinical Research Facility Young Person’s Advisory Group Meeting, 02 December 2017, Manchester, United Kingdom. Available from: http://www.slideshare.net/SimonStones/your-voice-your-story-your-life-you-matter.
  14. Stones, S.R. (2017). Social media and the path to health empowerment. Oral presentation at: 6th Children’s Research Network for Ireland and Northern Ireland Conference, 29 November 2017, Dublin, Ireland. Available from: http://www.slideshare.net/SimonStones/social-media-in-research-83139922.
  15. Stones, S.R. (2017). Breaking barriers, embracing expertise: When patients become people in research. Oral presentation at: 6th Children’s Research Network for Ireland and Northern Ireland Conference, 29 November 2017, Dublin, Ireland. Available from: http://www.slideshare.net/SimonStones/breaking-barriers-embracing-expertise-when-patients-become-people-in-research.
  16. Stones, S.R. (2017). Research – The best treatment I’ve ever had. Oral presentation at: INVOLVE at 21 Conference, 28 November 2017, London, United Kingdom. Available from: http://www.slideshare.net/SimonStones/research-the-best-treatment-ive-ever-had.
  17. Stones, S.R. (2017). Paving the way for a brighter future: Opportunities to involve young people in healthcare research across Greater Manchester. Oral presentation at: The University of Manchester’s Child Health Research Network’s workshop on Greater Manchester devolution, 20 November 2017, Manchester, United Kingdom. Available from: http://www.slideshare.net/SimonStones/paving-the-way-for-a-brighter-future-opportunities-to-involve-young-people-in-healthcare-research-across-greater-manchester.
  18. Preston, J. & Stones, S.R. (2017). Ensuring research really does involve the young person. Oral presentation at: The Health Research Authority (HRA) course on the ethical issues of research involving children, 08 November 2017, Manchester, United Kingdom. Available from: http://www.slideshare.net/SimonStones/ensuring-research-really-does-involve-the-young-person.
  19. Stones, S.R. (2017). Co-design, Co-produce, Co-deliver: Collaboration is the only viable path to success. Oral presentation at: Translate External Advisory Board Meeting, 06 November 2017, Leeds, Untied Kingdom. Available from: http://www.slideshare.net/SimonStones/codesign-coproduce-codeliver-collaboration-is-the-only-viable-path-to-success.
  20. Swallow, V. & Stones, S.R. (2017). Co-creating customised and reliable, home-based digital condition-management apps: a qualitative study involving children with long-term conditions. Oral presentation at: Patient Information Forum Conference, Health Information for Children and Young People, 03 November 2017, London, United Kingdom.
  21. Chadwick, C. & Stones, S.R. (2017). Introducing Consulting at McCann Health. Unpublished oral presentation at: University of Leeds, Faculty of Biological Sciences Placement Day, 21 September 2017, Leeds, United Kingdom.
  22. Stones, S.R. (2017). Pain is real, but so is hope. Oral presentation at: 16th European Network for Arthritis in Children (ENCA) Conference, 16 September 2017, Athens, Greece.
  23. Stones, S.R. (2017). What is really bothering my patient? Oral presentation at: 24th European Paediatric Rheumatology Congress, 15 September 2017, Athens, Greece. Available from: 10.13140/RG.2.2.35122.50882.
  24. Stones, S.R. (2017). Social media and the path to empowerment: We’ve got the power! Oral presentation at: Carion Fenn Foundation Support Group Meeting, 10 August 2017, Ajax, Ontario, Canada. Available from: http://www.slideshare.net/SimonStones/social-media-and-the-path-to-empowerment-weve-got-the-power.
  25. Stones, S.R. (2017). When personal and professional experiences intersect: the path to success. Oral presentation at: 1st European Patients’ Forum Summer Training Course for Young Patient Advocates, 05 July 2017, Vienna, Austria. Available from: http://www.slideshare.net/SimonStones/when-personal-and-professional-experiences-intersect-the-path-to-success.
  26. Stones, S.R. (2017). Self management of fibromyalgia from a patient perspective. Oral presentation at: 18th EULAR Annual Congress of Rheumatology, 17 June 2017, Madrid, Spain. Doi: 10.13140/RG.2.2.23365.86247.
  27. Stones, S.R. (2017). The patient will see you now: a new era of empowered people living with health conditions. Oral presentation at: Library and Information Health Network North West (LIHNN) / NW Health Care Libraries Unit (HCLU) Briefing, 13 June 2017, St Helens, United Kingdom. Doi: 10.13140/RG.2.2.29237.88809.
  28. van’t Hoff, W. & Stones, S.R. (2017). Patients as partners – transforming the delivery of clinical research in the NHS. Oral presentation at: 2nd Clinical Innovation and Partnering World 2017, 08 March 2017, London, United Kingdom.
  29. Stones, S.R. (2017). Shared experience of sitting on a clinical studies group (CSG) as a patient advocate. Oral presentation at: Diabetes UK Clinical Studies Groups Lay and Health Care Professional Member Induction, 27 February 2017, London, United Kingdom. Doi: 10.13140/RG.2.2.30340.94085.
  30. Stones, S.R., Nikiphorou, E. & Unesi, N. (2017). The social media revolution: strategies to create and strengthen communication in a digital era. Oral presentation at: 20th EULAR Annual European Conference of PARE, 24-25 February 2017, Cascais, Lisbon, Portugal. Doi: 10.13140/RG.2.2.28663.21927.
  31. Stones, S.R. & Wright, C. (2017). The development of a toolkit for patient, parent and carer representatives involved in shaping clinical and health services research. Oral presentation at: 20th EULAR Annual European Conference of PARE, 24 February 2017, Cascais, Lisbon, Portugal. Doi: 10.13140/RG.2.2.12410.29124.
  32. Stones, S.R. (2016). Using social media to deliver effective and engaging interactions. Oral presentation at: 2nd EULAR Young PARE Conference, 22 October 2016, Retie, Belgium. Doi: 10.13140/RG.2.2.27969.15205.
  33. Stones, S.R. (2016). Patient and public involvement in research – views of young people. Oral presentation at: 8th Conference of the European Paediatric Formulation Initiative, 21 September 2016, Lisbon, Portugal. Doi: 10.13140/RG.2.2.32374.80964.
  34. Stones, S.R. (2016). Shared experience of consumer involvement on a clinical studies group. Oral presentation at: Diabetes UK Clinical Studies Group Inaugural Chairs’ Forum, 08 September 2016, London, United Kingdom. Doi: 10.13140/RG.2.2.22827.03363.
  35. Preston, J., Stones, S.R., Barker, L. & George, E. (2016). Exciting things happen when involving young people to promote better research for better healthcare. Oral presentation at: 2nd Annual DPharm Europe Conference, 09 February 2016, London, United Kingdom. Doi: 10.13140/RG.2.2.20197.40166.
  36. Swallow, V. & Stones, S.R. (2015). Health professionals and patients as co- researchers: dream or reality? Oral presentation at: 1st Leeds Children’s Hospital Conference, 16 October 2016, Leeds, United Kingdom. Doi: 10.13140/RG.2.2.23552.84485.
  37. Majeed-Ariss, R., Fallon, D., Swallow, V., Hall, A., McDonagh, J.E. & Stones, S.R. (2015). Health theory in mobile technology apps supporting young people’s long-term condition/s management: a systematic review. Oral presentation at: 29th Conference of the European Society of Health Psychology, 01 September 2015, Limassol, Cyprus. Available from: http://www.researchgate.net/publication/283088080_Health_theory_in_mobile_technology_apps_supporting_young_people%27s_long-term_conditions_management_a_systematic_review.
  38. Swallow, V., Stones, S.R. & Majeed-Ariss, R. (2015). Nurses and patients as co-researchers: dream or reality? Oral presentation at: 2nd Biennial Nursing Scholarship Conference of Sigma Theta Tau International: Phi Mu Chapter, 19 June 2015, Leeds, United Kingdom. Available from: http://www.researchgate.net/publication/283088266_Nurses_and_patients_as_co-researchers_dream_or_reality.

Technical reports, strategy documents and toolkits

  1. Bijlsma, J.W.J., Caeyers, N., de Wit, M.P.T., Goyens, C., Kouloumas, M., Stamm, T., Stones, S.R., Wiek, D. & EULAR. (2018). 21st EULAR Annual European Conference of PARE report. Technical report produced by: EULAR Standing Committee of PARE.
  2. Bijlsma, J.W.J., Caeyers, N., de Wit, M.P.T., Goyens, C., Kouloumas, M., Mateus, E., Opava, C., Stones, S.R., Wiek, D. & EULAR. (2017). 20th EULAR Annual European Conference of PARE report. Technical report produced by: EULAR Standing Committee of PARE. Doi: 10.13140/RG.2.2.31549.67047.
  3. Stones, S.R., Douglas, S., Janson, D. & Wright, C. (2017). Clinical studies group: a toolkit for patient, parent and carer representatives. Toolkit produced by: NIHR CRN: Children/Arthritis Research UK Paediatric Rheumatology CSG Consumer TSG. Doi: 10.13140/RG.2.2.19030.45121.
  4. Andersen, J., Balazova, P., Caeyers, N., Klett, F., Olsder, W., Papastavrou, T., Stones, S.R., van Nieuwkoop, L. & EULAR Young PARE. (2016). 2nd EULAR Young PARE Conference, ‘Change the Future’ report. Technical report produced by: EULAR Young PARE. Doi: 10.13140/RG.2.2.10848.28168.
  5. Bijlsma, J.W.J., Boteva, B., Bozhinova, S., de Wit, M.P.T., Kouloumas, M., Mateus, E., Opava, C., Stones, S.R., Wiek, D. & EULAR. (2016). 19th EULAR Annual European Conference of PARE report. Technical report produced by: EULAR Standing Committee of PARE. Doi: 10.13140/RG.2.2.27625.49768.
  6. Swallow, V., Baildam, E., Chieng, A., Douglas, S., Foster, H., Hall, A., McDonagh, J., Stones, S.R., Thomson, W. & Wyllie, R. (2015). Fostering a Manchester-based, interdisciplinary research programme on mobile technologies for young people with long-term conditions to promote optimum disease management. Award report submitted for: The University of Manchester Research Institute Pump Priming Programme.
  7. Beresford, M.W., Baildam, E., Ramanan, A.V., Douglas, S., Clinch, J., Bishop, N., Rooney, M., Thomson, W., Stones, S.R., Sen, E., Pain, C., Armon, K., Haggart, E., Batchelor, H., Wright, C., Janson, D., Ioannou, J., Hawley, D., Nistala, K., McDonagh, J., Eleftheriou, D., Smith, E. & Duong, C. (2015). NIHR CRN: Children/Arthritis Research UK paediatric rheumatology clinical studies group clinical research strategy. Strategy document produced by: NIHR CRN: Children/Arthritis Research UK Paediatric Rheumatology CSG. Available from: http://www.arthritisresearchuk.org/~/media/Files/Research/Paediatric%20Rheumatology/Paed%20Rheum%20CSG%20Strategy%202015.ashx?la=en.
  8. Beresford, M.W., Baildam, E., Ramanan, A.V., Douglas, S., Clinch, J., Bishop, N., Rooney, M., Thomson, W., Stones, S.R., Sen, E., Pain, C., Armon, K., Haggart, E., Batchelor, H., Wright, C., Janson, D., Ioannou, J., Hawley, D., Nistala, K., McDonagh, J., Eleftheriou, D., Smith, E., Duong, C., Wedderburn, L.R., Brogan, P. & Al-Ashimi, A. (2015). Paediatric rheumatology CSG progress report 1st April 2014 – 31st March 2015. Technical report produced by: NIHR CRN: Children/Arthritis Research UK Paediatric Rheumatology CSG. Available from: http://www.arthritisresearchuk.org/~/media/Files/Research/Paediatric%20Rheumatology/Annual%20Reports/PR%20CSG%20Report%202015.ashx?la=en. 

Digital media

  1. Stones, S.R. (2018). What Is New – Paediatric Rheumatological Conditions. EMEUNET. Available from: http://emeunet.eular.org/win_paediatric_rheumatology.cfm.
  2. Stones, S.R. (2018). Simon R. Stones. Chronic Illness Bloggers Network. Available from: http://chronicillnessbloggers.com/bloggerdirectory/3005/simon-r-stones/.
  3. International Children’s Advisory Network (iCAN). (2018). What is iCAN research? iCAN. Available from: http://www.youtube.com/watch?v=Wwn35_hGM6A.
  4. International Children’s Advisory Network (iCAN). (2018). November spotlight awareness: Diabetes. iCAN. Available from: http://www.youtube.com/watch?v=zCOpnRM8NaY.
  5. Stones, S.R. (2017). Left to cope in the dark: The realities of being young with arthritis. Digital image at: 8th University of Leeds Doctoral College Showcase. Available from: https://simonstones.files.wordpress.com/2018/01/stones-2017-left-to-cope-in-the-dark.pdf.
  6. WEGO Health. (2017). 6th Annual WEGO Health Awards Nominees, Finalists and Winners. Digital video for: 6th WEGO Health Awards. Available from: http://www.youtube.com/watch?v=8y5SRyRLv14.
  7. WEGO Health. (2017). 2017 WEGO Health Awards Winner Healthcare Collaborator: Patient. Digital video for: 6th WEGO Health Awards. Available from: http://www.youtube.com/watch?v=8373s5wa4Gg.
  8. WEGO Health. (2017). 2017 WEGO Health Awards Finalists Healthcare Collaborator: Patient. Digital video for: 6th WEGO Health Awards. Available from: http://www.youtube.com/watch?v=uB8mfwpgtWw.
  9. European League Against Rheumatism. (2017). EULAR Don’t Delay Connect Today individual campaign video Simon Stones. Digital video for: World Arthritis Day. Available from: http://www.youtube.com/watch?v=CrH_aW3ZRs0.
  10. European League Against Rheumatism. (2017). EULAR Campaign Don’t Delay, Connect Today #ConnectToday. Digital video for: World Arthritis Day. Available from: http://www.youtube.com/watch?v=4S8fiTGL7wo&t=46s.
  11. European League Against Rheumatism. (2017). Mr. Simon Stones, EULAR Young PARE working group member. Digital video for: EULAR’s 70th Anniversary. Available from: http://www.youtube.com/watch?v=JKEeh5mwYFo.
  12. Stones, S.R. (2017). Seeing the GP: Advice and tips for young people. Digital media for: Healthtalk.org. Available from: http://www.healthtalk.org/young-peoples-experiences/seeing-gp-advice-and-tips-young-people/simon.
  13. National Institute for Health Research. (2017). PRA of the month… Simon Stones. Digital image for: NIHR Patient Research Ambassador Initiative. Available from: https://simonstones.files.wordpress.com/2016/10/pra-of-the-month-simon-stones.jpg.
  14. Stones, S.R. (2016). A heavy weight for small hands. Digital image at: 7th Annual University of Leeds Postgraduate Research Conference. Available from: https://simonstones.files.wordpress.com/2016/12/a-heavy-weight-for-small-hands.jpeg.  
  15. National Institute for Health Research. (2016). Simon Stones, Research Ambassador. Digital video for: NIHR Patient Research Ambassador Initiative. Available from: http://www.youtube.com/watch?v=MuxCy44pkm8.
  16. The University of Manchester. (2015). Outstanding Public Engagement Award (Student) – Simon Stones. Digital video at: The University of Manchester’s Making a Difference Awards for Social Responsibility 2015. Available from: http://www.youtube.com/watch?v=KVhssJIp-w8
  17. Arthritis Research UK. (2015). Growing up with arthritis: Simon’s journey to finding a career. Digital video for: Arthritis Research UK Campaigns. Available from: http://www.youtube.com/watch?v=9c91L6_7_DU.

Blogs and articles

  1. Faculty of Biology, Medicine and Health. (2018). Be open to change – not everything is set in stone. The University of Manchester. Available from: http://manchesterbmhstudents.wordpress.com/2018/09/14/be-open-to-change-not-everything-is-set-in-stone/.
  2. Stones, S.R. (2018). RAiISE-ing Our Voice – Simon. RAiISE. Available from: http://raiise.co.uk/2018/09/05/raiise-ing-our-voice-simon/.
  3. Stones, S.R. (2018). You can talk the talk, but can you walk the walk? Endeavouring to influence policy and practice as a patient researcher. European Patient Ambassador Programme/European Lung Foundation. Available from: http://www.epaponline.org/news/latest/can-you-walk.
  4. Alunno, A., Nikiphorou, E., Olsder, W. & Stones, S.R. (2018). Young PARE and EMEUNET – collaborating closely. Breakthrough 13/2018: 10. Available from: http://www.eular.org/myUploadData/files/eular_breakthrough_newsletter_issue_13_online_version.pdf.
  5. Stones, S.R. (2018). Introducing Young PARE. EULAR HPR News 3/2018: 12. Available from: http://www.eular.org/myUploadData/files/hpr_news_2018_1_final_web.pdf.
  6. Stones, S.R. (2018). Patient peer review for the Research Involvement and Engagement journal. BMC On Medicine. Available from: http://blogs.biomedcentral.com/on-medicine/2018/02/05/patient-peer-review-for-the-research-involvement-and-engagement-journal/.
  7. Stones, S.R. (2017). Simon R. Stones. UK Blog Awards. Available from: http://www.blogawardsuk.co.uk/ukba2018/entries/simon-r-stones.
  8. Stones, S.R. (2017). Simon Stones: Patient Research Ambassador case study. National Institute for Health Research. Available from: http://www.nihr.ac.uk/patients-and-public/how-to-join-in/patient-research-ambassadors/ambassador-stories/case-study-simon-stones.htm.
  9. Stones, S.R. (2017). Healthcare 2.0: Social media in healthcare. BMJ Evidence-based Nursing Blog. Available from: http://blogs.bmj.com/ebn/2017/07/16/health-2-0-social-media-in-healthcare/.
  10. Stones, S.R. (2017). Fica rme, orgulhoso e lembra-te, tu nunca estás sozinho! / Stand tall, stand proud and remember, you are never alone! Associação Nacional dos Doentes com Artrites Infantis. Available from: http://www.andai.org.pt/images/publicações/boletim25__-1a_Parte.pdf.
  11. Stones, S.R. (2017). You’ve never looked better! Arthur’s Place. Available from: http://arthursplace.co.uk/blog-post/youve-never-looked-better/.
  12. Stones, S.R. (2017). #MyIBDStory – Simon Stones. The Toilet Me and IBD. Available from: http://www.facebook.com/TMIBD/posts/1800938190223672.
  13. Stones, S.R. (2017). Simon’s story. Cloudy with a chance of pain. Available from: http://cloudywithachanceofpain.com/blog/simon-s-story.
  14. Stones, S.R. & Fibromyalgia Action UK. (2017). Cloudy guest blog: Fibromyalgia Action UK. Cloudy with a chance of pain. Available from: http://cloudywithachanceofpain.com/blog/guest-blog-fibromyalgia-uk.
  15. Stones, S.R. (2017). Man up: young men get arthritis too. Arthur’s Place. Available from: http://arthursplace.co.uk/blog-post/man-young-men-get-arthritis/.
  16. Stones, S.R. (2017). The future is ours. iCAN Research. Available from: http://www.icanresearch.org/the-future-is-ours/.
  17. Stones, S.R. (2017). Simon says… Arthur’s Place. Available from: http://arthursplace.co.uk/blog-post/simon-says/.
  18. Stones, S.R. (2017). Stepping stones. The Researcher 3: 4-5. Available from: http://www.cocreatedesign.com/clientarea/NHS/TheResearcherMagazine_Issue3/#p=4.
  19. Balazova, P., van Nieuwkoop, L. & Stones, S.R. (2017). Young PARE “Change the Future” conference. EULAR e-Breakthrough 14: 4. Available from: http://www.eular.org/sysModules/sysFiles/ckeditor_4/plugins/doksoft_uploader/userfiles/eBreakthrough%20January%202017%20FINAL.pdf.
  20. Stones, S.R. (2016). Talk about your arthritis. Flexiseq®. Available from: http://www.flexiseq.com/blog/simon-stones-talk-about-your-arthritis.
  21. Stones, S.R. (2016). Family-focused care across the life course. International Family Nursing Association. Available from: http://internationalfamilynursing.org/2016/12/18/family-focused-care-across-the-life-course/.
  22. Preston, J., Steel, R., Inns, K., Stones, S.R. & Wilson, K. (2016). Patients promoting and raising awareness of health research. Consumers Health Forum of Australia. Available from: http://chf.org.au/blog/patients-promoting-and-raising-awareness-health-research.
  23. Stones, S.R. (2016). Zivot s reumatickym ochorenim: „Ako zijem svoj zivot naplno“. Nálezy a straty s reumou 50-53. Available from: https://simonstones.files.wordpress.com/nalezy-a-straty-s-reumou_2016.
  24. Stones, S.R. (2016). Technology to help your arthritis. Flexiseq®. Available from: http://www.flexiseq.com/blog/technology-to-help-your-arthritis.
  25. Stones, S.R. (2016). Come godersi la vita sino in fondo: la storia di Simon. Morfologie 22: 16-19. Available from: http://www.apmar.it/documenti/notizie/Morfologie/morfologie_22-2016_-_APMAR_Onlus.pdf.
  26. Stones, S.R. (2016). Making research everyone’s business. Patient Research Exchange. Available from: http://www.patientresearchexchange.org/stories/detail/making- research-everyones-business.
  27. Stones, S.R. (2016). Simon Stones – Top tips for studying with arthritis. Flexiseq®. Available from: http://www.flexiseq.com/blog/simon-stones-top-tips-for-studying-with-arthritis.
  28. Stones, S.R. (2016). Meet Simon and EULAR. PsAZZ News 16: 6-9.
  29. Stones, S.R. (2016). Das leben voll auskosten. Mobil Deutsche Rheuma-Liga 20-21. 
  30. Stones, S.R. (2016). Collaboration is the key to success. EULAR e-Breakthrough Special Issue July 2016: 4. Available from: http://www.eular.org/myUploadData/files/e-Breakthrough%20Special%20Issue%20London%20Congress%20July%202016%20FINAL.pdf.
  31. Stones, S.R. (2016). 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. EULAR Edgar Stene Prize 2016 7-8. Available from: http://www.eular.org/myUploadData/files/EULAR_Stene_Prize_Book_ONLI NE_Version_2016_06-06-16.pdf.
  32. Stones, S.R. (2016). Trust me, better days will come. Arthur’s Place. Available from: http://arthursplace.co.uk/life/real-life- stories/2016/05/09/trust-better-days-will-come/.
  33. Stones, S.R. (2016). Arthritis is for old people, right? The Huffington Post. Available from: http://www.huffingtonpost.co.uk/simon-stones-/arthritis-is- for-old-people-right_b_9784016.html?utm_hp_ref=uk-health.
  34. Stones, S.R. (2016). Inspiring story: living with fibromyalgia and arthritis from the age of three. Fibromyalgia Action UK. Available from: http://www.fmauk.org/latest-news-mainmenu-2/articles-1/1055-inspiring-story-living-with-fibromyalgia-and-arthritis-from-the-age-of-three.
  35. Stones, S.R. (2016). So many things; so little time! Transition Information Network My Future Choices 28: 20-21. Available from: http://councilfordisabledchildren.org.uk/sites/default/files/uploads/docu ments/Issue28_Feb2016.pdf.
  36. Preston, J., Stones, S.R., George, E., Barker, L. & Flewitt, J. (2016). Exciting things happen when involving young people to promote better research for better healthcare. GenerationR. Available from: http://generationr.org.uk/exciting-things-happen-when-involving-young- people-to-promote-better-research-for-better-healthcare/.
  37. Stones, S.R. (2016). Top tips for living with IBD at university. IBD Relief. Available from: http://www.ibdrelief.com/learn/living-with-ibd/young- people/university/university-top-tips.
  38. Stones, S.R. (2016). Living with IBD at university. IBD Relief. Available from: http://www.ibdrelief.com/learn/living-with-ibd/young- people/university/living-with-ibd-at-university.
  39. Stones, S.R. (2016). Simon Stones – My IBD story. IBD Relief. Available from: http://www.ibdrelief.com/ibd-stories/simon-stones.
  40. Stones, S.R. (2015). Patients in research: delivering person-centric care. Students 4 Best Evidence. Available from: http://www.students4bestevidence.net/patients-research-delivering- person-centric-care/.
  41. Stones, S.R. (2015). Having arthritis since the age of three has led me to a research career. Arthritis Research UK. Available from: http://www.arthritisresearchuk.org/arthritis-information/your- stories/juvenile-idiopathic-arthritis/simon-stones.aspx.
  42. Stones, S.R. (2014). 1962 – The first total hip replacement. Bollington Festival Scarecrow Science Festival: 50 years of biomedical discovery.
  43. Stones, S.R. (2014). Autoimmune disease series: IBD – hate your guts? Oxbridge Biotech Roundtable.
  44. Stones, S.R. (2013). Autoimmune disease series: Arthritis – fact or fiction? Oxbridge Biotech Roundtable.

Acknowledgments

  1. Waite-Jones, J.M. & Swallow, V. (2018). Peer-based social support for young-people with Juvenile Arthritis: views of young people, parents/carers and healthcare professionals within the UK. Journal of Pediatric Nursing.
  2. Salunke, S. & Tuleu, C. (2018). Formulating better medicines for children – Collaborate to innovate. International Journal of Pharmaceutics 536(2): 487-489. Doi: 10.1016/j.ijpharm.2017.08.009.
  3. Deepak, S., Baildam, E., McErlane, F. and HTA 14/167/01 SIRJIA Trial Management Group. (2017). Outcome measures used in JIA trials – a literature review as part of the SIRJIA Study. Pediatric Rheumatology 15(Suppl 2): P230. Doi: 10.1186/s12969-017-0186-9.
  4. Healthtalk.org. (2017). Seeing the GP: Advice and tips for young people. Healthtalk.org. Available from: http://www.healthtalk.org/young-peoples-experiences/seeing-gp-advice-and-tips-young-people/credits.
  5. Arthritis Research UK. (2017). Musculoskeletal conditions and multimorbidity. Arthritis Research UK. Available from: http://www.arthritisresearchuk.org/policy-and-public-affairs/reports-and-resources/reports/multimorbidities-report.aspx.
  6. Swallow, V., Tod, A. & Smith, J. (2017). Fostering and sustaining UK, multidisciplinary, family- focused care across the life-course: A White Rose collaboration in long-term condition management. White Rose University Consortium. Available from: http://www.whiterose.ac.uk/wp-content/uploads/2016/01/FAMILY-FOCUSED-CARE-Workshop-Report.pdf.
  7. Balazova, P. (2016). The role of Young PARE in getting organised: The virtual knowledge centre. Annals of the Rheumatic Diseases 75 (Suppl 2): 18. Doi: 10.1136/annrheumdis-2016-eular.6371.
  8. Majeed-Ariss, R., Hall, A.G., McDonagh, J., Fallon, D. & Swallow, V. (2015). Mobile phone and tablet apps to support young people’s management of their physical long-term conditions: a systematic review protocol. JMIR Research Protocols 4(2): e40. Doi: 10.2196/resprot.4159.
  9. McErlane, F., Armitt, G., Douglas, S., HQIP JIA Audit Expert Group, BSPAR Parent Group, CHART Consortium, CAPTURE-JIA Steering Group, Pilkington, C., Thomson, W., Bailey, K. & Cleary, G. (2015). Development of a national clinical audit tool for children and young people with juvenile idiopathic arthritis (JIA) – a BSPAR project funded by the Healthcare Quality Improvement Partnership (HQIP). Poster presentation at: BSPAR Conference, 24-25 September 2015, Belfast, United Kingdom. Available from: http://www.researchgate.net/publication/282947623_Development_of_a_national_clinical_audit_tool_for_children_and_young_people_with_juvenile_idiopathic_arthritis_JIA_-_a_BSPAR_project_funded_by_the_Healthcare_Quality_Improvement_Partnership_HQIP.

Media coverage and contribution

  1. Thompson, K. & Dalton, S. (2018). Using social media to promote your research. University of Leeds. Available from: http://www.slideshare.net/KirstenThompson2/social-media-for-researchers-openresleeds2018.
  2. EULAR. (2018). ‘Don’t Delay, Connect Today’ educates on the importance of early diagnosis of rheumatic and musculoskeletal diseases. Open Access Government. Available from: http://www.openaccessgovernment.org/rheumatic-and-musculoskeletal-diseases/53224/.
  3. Olsen, J. (2018). Fibromyalgien er global. Medlemsbladet – fibromyalgi. Available from: http://www.fibromyalgi.dk/til-medlemmer/medlemsblad/nr-4-2018/.
  4. Prakken, B. (2018). Paediatric Rheumatology European Society (PReS). EULAR e-Breakthrough 19: 3. Available from: http://www.eular.org/myUploadData/files/ebreakthrough_october_2018_final.pdf.
  5. Children’s Parliament. (2018). Unfearties – Simon Stones. Children’s Parliament. Available from: http://www.childrensparliament.org.uk/about-us/unfearties/simon-stones/.
  6. BMC. (2018). Author Profile – Simon R. Stones. BMC. Available from: http://blogs.biomedcentral.com/blog/author/simonstones/.
  7. EMEUNET. (2018). EMEUNEWS Special Edition: Meet the EMEUNET Working Group 2018-2019. Emerging EULAR Network. Available from: http://emeunet.eular.org/myUploadData/files/working_group_newsletter_2018_19_final.pdf.
  8. iCAN. (2018). iCAN Quarterly Newsletter Summit Recap Edition. International Children’s Advisory network. Available from: http://icanresearch.org/wp-content/uploads/2018/08/compressed2018.summary.pdf.
  9. EMEUNET. (2018). Report of the EULAR/EMEUNET Ambassador Programme 2018. Emerging EULAR Network. Available from: http://emeunet.eular.org/myUploadData/files/report_of_the_eular_ambassador_programme_2018.pdf.
  10. EMEUNET. (2018). EMEUNEWS EULAR Do Not Miss: EULAR 2018. Emerging EULAR Network. Available from: http://emeunet.eular.org/myUploadData/files/eular_2018_dnm_issue.pdf.
  11. WEGO Health. (2018). 2018 WEGO Health Awards. WEGO Health. Available from: http://youtu.be/hkXZ7qXm9X8.
  12. Howson, N. (2018). Health Tweet Feast 16-22 April – join in and tweet! University of Leeds, Faculty of Medicine and Health, School of Healthcare. Available from: http://medhealth.leeds.ac.uk/news/article/1400/health_tweet_feast_16-22_april-join_in_and_tweet.
  13. National Institute for Health Research. (2018). Patient research ambassador initiative newsletter (issue 2). NIHR Clinical Research Network. Available from: http://mailchi.mp/5fd5882a97ff/patient-research-ambassadors-initiative-issue-2?e=827c475173.
  14. Evidence-based Nursing. (2018). Self harm with young people. Storify. Available from: http://storify.com/EBN_BMJ/self-harm-with-young-people.
  15. CreakyJoints. (2018). #CreakyChats Research and Chronic Diseases. Storify. Available from: http://storify.com/CreakyJoints/creakychats-research-and-chronic-diseases.
  16. Maddocks, L. & Palmer-Cooper, E. (2018). INVOLVE at 21. NIHR CLAHRC Oxford and the Nuffield Department of Primary Care Health Services, University of Oxford PPI Pulse. Available from: http://indd.adobe.com/view/e962da3b-58e0-470c-8d49-a8fd8c205690.
  17. Chronically Academic. (2018). Newsletter 01/18: Meet our members! Chronically Academic. Available from: http://chronicallyacademic.org/index.php/en/.
  18. Scrafton, C. (2018). The Leibster Blogging Award – Simon R Stones nominations. FibroFlutters. Available from: http://fibroflutters.com/2018/01/19/the-leibster-blogging-award-simon-r-stones-nominations/.
  19. Flanagan, S. (2018). Past pupil Simon Stones nominated for the 2018 Shaw Trust Power List. St. Joseph’s R.C. High School & Sports College. Available from: http://www.facebook.com/StJosephsRCHS/posts/1712371195497004:0.
  20. Scrafton, C. (2018). #ChronicIllness morning post: A selection of online health related newspapers/magazines. FibroFlutters. Available from: http://fibroflutters.com/2018/01/15/chronicillness-morning-post-a-selection-of-online-health-related-newspapers-magazines-6/.
  21. Scrafton, C. (2018). Nomination > Liebster Award 2018. FibroFlutters. Available from: http://fibroflutters.com/2018/01/11/nomination-liebster-award-2018/.
  22. CreakyJoints. (2018). Sharing our CreakyTruths. Storify. Available from: http://storify.com/CreakyJoints/sharing-our-creakytruths.
  23. WEGO Health. (2017). Patient Leader #FollowFriday – December 29th. WEGO Health. Available from: http://www.wegohealth.com/2017/12/29/patient-leader-followfriday-december-29th/.
  24. Substance Misuse and Ageing Research Team (2017). @SMARTatUOB joins Twitter. University of Bedforshire. Available from: http://storify.com/SMARTatUOB/the-smart-team-joins-twitter.
  25. PenCLAHRC Evidence Synthesis Team. (2017). Evidence synthesis can be a slog – we need to INVOLVE children and young people! Evidence Synthesis Team. Available from: http://evidsynthteam.wordpress.com.
  26. NIHR CLAHRC North West London. (2017). CLAHRC NWL @ #InvolveAt21. NIHR CLAHRC North West London. Available from: http://storify.com/CLAHRC_NWL/clahrc-nwl-involveat21.
  27. INVOLVE. (2017). INVOLVE at 21 Conference. INVOLVE. Available from: http://storify.com/gillwren/involve-at-21-conference.
  28. Dolan, M. (2017). How chronic illnesses helped me discover my mission. Everyday Health. Available from: http://www.everydayhealth.com/psoriatic-arthritis/living-with/how-psoriatic-arthritis-helped-me-discover-my-mission/.
  29. Self Care Forum. (2017). Self Care Week 2017: Twitterchat. Self Care Forum. Available from: http://storify.com/SelfCareForum/self-care-week-2017-twitterchat.
  30. Boyd, P. (2017). Young PARE Newsletter Edition 5: Simon Stones – Healthcare: Patient Collaborator, WEGO Health Award Winner. EULAR Young PARE. Available from: http://mailchi.mp/8335ab0be7ff/eular-young-pare-newsletter-edition-1470693?e=d6a874e016.
  31. Ricci, M. (2017). Being patient-centric: communication, co-creation and collaboration. PharmaPhorum. Available from: http://pharmaphorum.com/views-and-analysis/patient-centric-communication-co-creation-collaboration/.
  32. WEGO Health. (2017). WEGO Health announces 16 winners of the 2017 WEGO Health Awards. WEGO Health. Available from: http://www.wegohealth.com/press_release/wego-health-announces-16-winners-2017-wego-health-awards/.
  33. Zimmerman, J. (2017). Your advice to new patient leaders. WEGO Health. Available from: http://www.wegohealth.com/2017/10/17/your-advice-to-new-patient-leaders/.
  34. Saul, R. (2017). Fibromyalgia could be ruining one in 20 lives, explains Bolton sufferer Simon Stones. Telegraph & Argus. Available from: http://www.thetelegraphandargus.co.uk/news/15542680.Lady_Gaga_shines_spotlight_on_little_known_chronic_pain_condition/.
  35. Saul, R. (2017). Fibromyalgia could be ruining one in 20 lives, explains Bolton sufferer Simon Stones. The Bolton News. Available from: http://www.theboltonnews.co.uk/news/15542680.Lady_Gaga_shines_spotlight_on_little_known_chronic_pain_condition/.
  36. National Institute for Health Research. (2017). Patient research ambassadors travel to Florida to promote young people’s involvement in research. National Institute for Health Research. Available from: http://www.nihr.ac.uk/news/patient-research-ambassadors-travel-to-florida-to-promote-young-peoples-involvement-in-research/6636.
  37. European Patients Forum. (2017). Young patient advocates learning about the virtues of leadership. European Patients Forum. Available from: http://www.eu-patient.eu/News/News/young-patient-advocates-learning-about-the-virtues-of-leadership/.
  38. Healthtalk.org. (2017). Long-term conditions: Advice to other young people. Seeing the GP. Available from: http://www.seeingthegp.co.uk/advice-young-long-term-condition.
  39. Healthtalk.org. (2017). Long-term conditions: What’s it like seeing a GP about a long-term problem? Seeing the GP. Available from: http://www.seeingthegp.co.uk/seeing-gp-long-term-conditions.
  40. Healthtalk.org. (2017). Long-term conditions: Making an appointment. Seeing the GP. Available from: http://www.seeingthegp.co.uk/making-gp-appointment-long.
  41. Healthtalk.org. (2017). Long-term conditions: Getting a diagnosis. Seeing the GP. Available from: http://www.seeingthegp.co.uk/diagnosis-long-term-condition.
  42. Olsder, W. (2017). People with arthritis/rheumatism in Europe (PARE) sessions. EMEUNEWS EULAR Highlights 18. Available from: http://emeunet.eular.org/myUploadData/files/EULAR_2017_Highlights_Issue.pdf.
  43. Flanagan, S. (2017). Past pupil Simon Stones. St. Joseph’s R.C. High School & Sports College. Available from: http://www.facebook.com/StJosephsRCHS/photos/a.432007456866724.104619.427822610618542/1491795594221233/.
  44. Davies, W. (2017). I look fine from the outside. Inspire by Arthritis Care. Available from: http://portfolio.cpl.co.uk/portfolio/inspire/2017-summer/cover/.
  45. Bowers, P. (2017). Week 13. Bath to Rome. Available from: http://www.bathtorome.co.uk/week-13/.
  46. Cloudy with a chance of pain. (2017). Cloudy’s patient partners discuss what the future holds for the study, Cloudy newsletter #51 – 9th February 2017. Cloudy with a chance of pain. Available from: https://simonstones.files.wordpress.com/2016/10/cloudy-with-a-chance-of-pain-newsletter-we-reconvene-our-cloudy-patient-partner-group.pdf.  
  47. International Children’s Advisory Network. (2017). Why is iCAN important to you? Simon Stones, Generation R. iCAN Research. Available from: http://www.icanresearch.org, https://simonstones.files.wordpress.com/2016/10/ican-slider-homepage.png.
  48. Starling, B. (2016). New radio programme will inspire young children and families to think about medical research. Central Manchester University Hospitals NHS Foundation Trust Research and Innovation. Available from: http://research.cmft.nhs.uk/news-events/new-radio-programme-will-inspire-young-children-and-families-to-think-about-medical-research.
  49. National Institute for Health Research. (2016). Ambassador Stories: NIHR Clinical Research Network (CRN): Children, Simon Stones. NIHR Patient Research Ambassador Initiative. Available from: http://www.nihr.ac.uk/patients-and-public/how-to-join-in/patient-research-ambassadors/ambassador-stories.htm. 
  50. Malone, A. (2016). 15 things people with arthritis want you to know. BuzzFeed. Available from: http://www.buzzfeed.com/ailbhemalone/15-things-people-with-arthritis-want-you-to-know?utm_term=.wqy2G3NBz#.iaNvLWKOx.
  51. Platform of Organisations of People with Rheumatic Diseases in Southern Europe. (2016). Report on the 2nd meeting of Young PARE. AGORA. Available from: http://www.agora-platform.eu/report-on-the-2nd-meeting-of-young-pare/.
  52. Fenn, C. (2016). Speakers. Carion Fenn Foundation. Available from: http://www.carionfenn.org/speakers.html.
  53. Fenn, C. (2016). Ask The Experts. Carion Fenn Foundation Rare Disease Health and Wellness Expo. Available from: http://www.rarediseaseexpo.com/ask-the-expert-panel.html.
  54. Fenn, C. (2016). Rare disease health and wellness expo. ParentSource. Available from: http://www.parentsource.ca/events/rare-disease-health-and-wellness-expo.html.
  55. Arthritis and Musculoskeletal Alliance. (2016). FMA UK welcomes new trustee. ARMA. Available from: http://arma.uk.net/fma-uk-welcomes-new-trustee/.
  56. Prosser, L. (2016). Creative project invites young people with arthritis to develop products and technology to help improve their life. Central Manchester University Hospitals NHS Foundation Trust Research and Innovation. Available from: http://research.cmft.nhs.uk/news- events/creative-project-invites-young-people-with-arthritis-to-develop- products-and-technology-to-help-improve-their-life.
  57. World Arthritis Day. (2016). The future in your hands. World Arthritis Day. Available from: http://worldarthritisday.org/our-campaign.
  58. ReumaNet. (2016). Britse jongeman winnaar van de Stene Prijs. ReumaNet. Available from: http://www.reumanet.be/britse-jongeman-winnaar-van-de-stene-prijs.
  59. Goyens, C. (2016). Edgar Stene prijs 2016 – Part 2 de Europese winnaar. Wolf and the city. Available from: http://wolfandthecity.blogspot.co.uk/2016/03/edgar-stene-prijs-2016-part-2-de.html.
  60. Deutsche Rheuma-Liga. (2016). Stene preis gewinner 2016: Das leben voll auskosten. Deutsche Rheuma-Liga. Available from: http://www.rheuma-liga.de/aktivitaeten/international/stene-preis/stene-preis-gewinner-2016/.
  61. Deutsche Rheuma-Liga. (2016). Edgar Stene preis. Deutsche Rheuma-Liga. Available from: http://www.rheuma-liga.de/stene-preis/.
  62. Liga Portuguesa Contra as Doenças Reumáticas. (2016). Prémio Edgar Stene 2016. LPCDR. Available from: http://www.lpcdr.org.pt/noticias-eventos/273-premio-edgar-stene-2016-portugal.
  63. Youth-R-Well.com. (2016). Winnend essay Edgar Stene prize. Youth-R-Well.com. Available from: http://www.youth-r-well.com/nieuws-mobile/360-winnend-essay-edgar-stene-prize.
  64. Lupus Europe. (2016). Stene prize. Lupus Europe. Available from: http://lupus-europe-blog.org/2016/06/28/stene-prize/.
  65. National Rheumatoid Arthritis Society. (2016). Edgar Stene prize. NRAS. Available from: http://www.nras.org.uk/edgar-stene-prize-entries.
  66. Scleroderma and Raynaud’s UK. (2016). National event in London. SRUK. Available from: http://www.sruk.co.uk/about-us/news/national-event-london/.
  67. EULAR. (2016). Digital health interventions boost self-care in chronically ill. EULAR 2016 Congress News Thursday Edition: 6. Available from: https://simonstones.files.wordpress.com/2016/10/thursdaylowres_web.pdf.
  68. EULAR. (2016). Stene Prize: Taking action despite life’s challenges. EULAR 2016 Congress News Friday/Saturday Edition: 4. Available from: https://simonstones.files.wordpress.com/2016/10/eular-2016-congress-news-friday-saturday.pdf.
  69. EULAR Standing Committee of PARE. (2016). Edgar Stene Prize 2016 goes to the United Kingdom. EULAR Breakthrough 11: 8. Available from: http://www.eular.org/myUploadData/files/EULAR_BREAKTHROUGH_Newsletter_Issue_11_ONLINE.pdf.
  70. Arthritis and Musculoskeletal Alliance. (2016). Edgar Stene prize 2016 UK winner. ARMA. Available from: http://arma.uk.net/edgar-stene-prize-2016-uk-winner/.
  71. EULAR Standing Committee of PARE. (2016). 2016 winner of the Stene prize: Simon Stones, UK. EULAR. Available from: http://www.eular.org/pare_stene_prize.cfm.
  72. Stones, S.R. (2016). Simon Stones: Consumer health advocate and researcher in the UK. The Huffington Post. Available from: http://www.huffingtonpost.com/author/simon-stones-.
  73. The Conference Forum. (2016). Disrupting clinical trials Europe speakers: Simon Stones. The Conference Forum. Available from: http://theconferenceforum.org/conferences/dpharm-europe/speakers/simon-stones/.
  74. EULAR Standing Committee of PARE. (2016). Social media taken by storm High 5 for World Arthritis Day 2015! EULAR e-Breakthrough 11: 6. Available from: http://www.eular.org/myUploadData/files/eBreakthrough%20issue%2011%20Jan%202016%20FINAL.pdf.
  75. Everett, S. (2015). Arthritis in adolescence: dispelling the myths. People & Places. Available from: http://peopleandplaces.me/2015/05/02/arthritis-in-adolesence-dispelling-the-myths/.
  76. Everett, S. (2015). Arthritis in adolescence: dispelling the myths. Buzz. Available from: http://buzz.bournemouth.ac.uk/2015/04/arthritis-in-adolescence/.
  77. Batchelor, S. (2015). Inspirational video stating why research matters to children and young people. HannahBatchelor.com. Available from: http://hannahbatchelor.com/2015/05/15/inspirational-video-stating-why-research-matters-to-children-and-young-people/.
  78. The University of Manchester. (2015). Meet the 2015 winners. The University of Manchester. Available from: http://www.socialresponsibility.manchester.ac.uk/get-involved/awards/meet-the-2015-winners/.
  79. The University of Manchester. (2015). Award winners and highly commended 2015. The University of Manchester. Available from: http://www.socialresponsibility.manchester.ac.uk/get-involved/awards/award-winners-and-highly-commended-2015/.
  80. Grew, T. & Stones, S.R. (2015). This is my story – animation and more children and young people share their experiences of being involved in research. NIHR INVOLVE. Available from: http://www.invo.org.uk/find-out-more/getting-involved/public-information-pack-whiteboard/.
  81. Patients Included. (2014). Signatories. Patients Included Charters. Available from: http://patientsincluded.org/conferences/conference-signatories/.
  82. McCoy, N. (2014). Young arthritis sufferer develops app to help children battling the condition. Salus Digital. Available from: http://salusdigital.net/young-arthritis-sufferer-develops-app-help-children-battling-condition/.
  83. Hall, A., Stones, S.R. & Swallow, V. (2014). 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. NIHR INVOLVE. Available from: http://www.invo.org.uk/posttypeconference/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/.
  84. Dobson, C. (2014). Young arthritis sufferer develops app to help children battling the condition. The Bolton News. Available from: http://www.theboltonnews.co.uk/news/11430711.young_arthritis_sufferer_ develops_app_to_help_children_battling_the_condition/.
  85. Dobson, C. (2014). I won’t let Crohn’s disease stop me leading a normal life. The Bolton News. Available from: http://www.theboltonnews.co.uk/news/11338135._I_won_t_let_Crohn_s_di sease_stop_me_leading_a_normal_life_/.
  86. De Graaf, M. (2013). Manchester scientists offer new hope to young arthritis victims. Manchester Evening News. Available from: http://www.manchestereveningnews.co.uk/news/health/manchester-scientists-offer-new-hope-2994232.
  87. Chaudhari, S. (2010). A remarkable young man. The Bolton News. Available from: http://www.theboltonnews.co.uk/news/8351323.A_remarkable_young_man/.
  88. Lavender, J. (2005). Can you help our Simon? Bolton Evening News. Available from: http://www.theboltonnews.co.uk/news/5785569.Can_you_help_our_Simon _/.

Unpublished articles and reviews

  1. Stones, S.R. (2017). Standards and recommendations for the development, evaluation and implementation of smartphone applications for young people aged 10 to 24 with rheumatic and musculoskeletal diseases: a scoping review of empirical research and an exploratory sequential mixed methods study proposal. Unpublished article for: HECS5238M Mixed Methods Research, 10 May 2017.
  2. Stones, S.R. (2017). A critical appraisal of three qualitative studies exploring the needs, experiences and motivations of children and young people with long-term conditions regarding self-management. Unpublished article for: HECS5237M Introduction to Qualitative Research Methods, 12 January 2017.
  3. Stones, S.R. (2016). Kids get arthritis too. Unpublished article for: BIOL31230 Science Media Project, 28 March 2016.
  4. Stones, S.R. (2016). Innate immunity in the brain in health and disease. Unpublished article for: BIOL31612 Neuroinflammation in Health and Disease, 08 March 2016.
  5. Stones, S.R. (2016). Safety pharmacology and approaches used to assess cardiovascular and neurological safety of candidate drugs. Unpublished article for: BIOL31602 Toxins, Toxicants and Toxicity, 05 March 2016.
  6. Stones, S.R. (2016). Legislation regarding the use of human embryonic stem cells for research. Unpublished article for: BIOL30000 Academic Tutorials, 04 March 2016.
  7. Stones, S.R. (2016). Severe combined immunodeficiency. Unpublished article for: BIOL31802 Immune Response and Disease, 22 February 2016.
  8. Stones, S.R. (2016). Explanation of the CRISPR/Cas9 system, and its role in editing genomes. Unpublished article for: BIOL30000 Academic Tutorials, 19 February 2016.
  9. Stones, S.R. (2016). The beneficial and detrimental effects of the immune system. Unpublished article for: BIOL30000 Academic Tutorials, 05 February 2016.
  10. Stones, S.R. (2015). The problematic clinical diagnosis of Cushing’s Syndrome. Unpublished article for: BIOL31751 Advanced Endocrinology, 03 December 2015.
  11. Stones, S.R. (2015). Clinical diagnosis of secondary hyperparathyroidism. Unpublished article for: BIOL31751 Advanced Endocrinology, 03 December 2015.
  12. Stones, S.R. (2015). The role of interleukin-6 in the pathogenesis of systemic juvenile idiopathic arthritis. Unpublished article for: BIOL30101 Literature Review, 26 November 2015.
  13. Stones, S.R. (2015). Contrast and comparison of T cell and B cell receptors. Unpublished article for: BIOL31371 Advanced Immunology, 28 October 2015.
  14. Stones, S.R. (2015). The role of the microbiota in human health. Unpublished article for: BIOL30000 Academic Tutorials, 20 October 2015.
  15. Stones, S.R., Becerra, S. & Bull, S. (2015). Living with rheumatoid arthritis: a descriptive study of patient experiences and attitudes towards the pharmaceutical industry. Unpublished article for: BIOL40000 Placement Report, 04 October 2015.
  16. Stones, S.R. (2014). Cellular mechanisms and treatment of osteoarthritis. Unpublished article for: BIOL21092 Dissertation, 19 March 2014.
  17. Stones, S.R. (2014). Urinary drug metabolite testing: paracetamol metabolism. Unpublished article for: BIOL200902 Clinical Sciences Research Module, 15 March 2014.
  18. Stones, S.R. (2014). The role of glutamine in superoxide production and the expression of p47phox, p22phox, and gp91phox in rat neutrophils. Unpublished article for: BIOL20000 Academic Tutorials, 18 February 2014.
  19. Stones, S.R. (2013). Effects of ethanol on performance and their relationship to breath concentration. Unpublished article for: BIOL21071 Physiology and Biomedical Sciences Experimental Design Module, 11 December 2013.
  20. Stones, S.R. (2013). The anti-inflammatory effects of cortisol. Unpublished article for: BIOL20000 Academic Tutorials, 23 November 2013.
  21. Stones, S.R. (2013). Public-private partnerships are an important tool for realising the benefits of research and should be encouraged. Unpublished article for: BIOL20000 Academic Tutorials, 18 November 2013.
  22. Stones, S.R. (2013). Examining the effects of Darapladib on atherosclerotic lesions and cytokine levels. Unpublished article for: BIOL20000 Academic Tutorials, 15 November 2013.
  23. Stones, S.R. (2013). JD-1 cell line use. Unpublished article for: BIOL20000 Academic Tutorials, 28 October 2013.
  24. Stones, S.R. (2013). Effect of cigarette smoking on levels of bioavailable testosterone in healthy men. Unpublished article for: BIOL20000 Academic Tutorials, 28 September 2013.
  25. Stones, S.R. (2013). Guinea-pig ileum: concentration-response relationship and competitive antagonism. Unpublished article for: BIOL10402 Introduction to Experimental Biology, 23 April 2013.
  26. Costello, S., Edwards, O., Heeney, N., Nelson, J., Owen, E., Rosher, C. & Stones, S.R. (2013). From grey to green. Unpublished article for: BIOL10000 Academic Tutorials, 21 March 2013.
  27. Stones, S.R. (2013). Animal pharm – the ethics of animal experiments. Unpublished article for: BIOL10000 Academic Tutorials, 17 March 2013.
  28. Stones, S.R. (2012). How are memories received? Unpublished article for: BIOL10000 Academic Tutorials, 23 November 2012.
  29. Stones, S.R. (2012). How the retina works. Unpublished article for: BIOL10000 Academic Tutorials, 22 October 2012.
  30. Stones, S.R. (2012). What right do we have to intervene in natural life processes? Where are the boundaries and who decides them? Unpublished article for: BIOL10000 Academic Tutorials, 22 September 2012.

Unpublished posters and presentations

  1. Stones, S.R. (2017). STEM Talk: What is it like to study a science degree at university? Unpublished oral presentation at: St. John Rigby College, 23 May 2017, Wigan, United Kingdom.
  2. Stones, S.R. (2016). Molecular biology of cancer: A brief overview of hallmarks of tumourigenesis. Unpublished oral presentation for: BIOL30000 Academic Tutorials, 25 April 2016.
  3. Stones, S.R. (2016). Juvenile idiopathic arthritis: It’s not just an old person’s disease. Unpublished oral presentation for: BIOL30000 Academic Tutorials, 18 April 2016.
  4. Stones, S.R. (2016). Juvenile idiopathic arthritis: It’s not just an old person’s disease. Unpublished oral presentation at: The University of Manchester Centre for Musculoskeletal Research Group Seminar, 13 March 2016.
  5. Stones, S.R. (2016). Juvenile idiopathic arthritis: It’s not just an old person’s disease. Unpublished oral presentation at: The University of Manchester Immunology Group Meeting, 13 March 2016.
  6. Stones, S.R. (2015). STEM Talk: What can you do to be the best? Unpublished oral presentation at: St. Joseph’s High School, 11 December 2015, Bolton, United Kingdom.
  7. Stones, S.R. (2015). STEM Talk: What can you do with A-level Biology? Unpublished oral presentation at: Winstanley College, 09 November 2015, Wigan, United Kingdom.
  8. Stones, S.R. (2015). The role of interleukin-6 in the pathogenesis of systemic juvenile idiopathic arthritis. Unpublished oral presentation for: BIOL30101 Literature Review, 05 November 2015.
  9. Stones, S.R. (2015). Industrial experience placement with Double Helix Consulting. Unpublished oral presentation at: The University of Manchester Faculty of Life Sciences. 04 November 2015.
  10. Stones, S.R. (2015). Unravelling complexity, delivering clarity. Unpublished oral presentation at: The University of Manchester Faculty of Life Sciences. 19 September 2015.
  11. Bojanova, G., Kerrison, S. & Stones, S.R. (2014). Clinical drug development: Compound 128 pre-clinical testing. Unpublished poster presentation for: BIOL21302 Clinical Drug Development, 01 May 2014.
  12. Stones, S.R. (2014). Interleukin-1β processing and secretion. Unpublished poster presentation for: BIOL20000 Academic Tutorials, 25 February 2014.
  13. Stones, S.R. (2013). Should science be regulated at the international level? Unpublished oral presentation for: BIOL20000 Academic Tutorials, 08 December 2013.
  14. Stones, S.R. (2013). Low testosterone level predicts prostate cancer in re- biopsy in patients with high grade prostatic intraepithelial neoplasia. Unpublished oral presentation for: BIOL20000 Academic Tutorials, 05 October 2013.
  15. Costello, S., Edwards, O., Heeney, N., Nelson, J., Owen, E., Rosher, C. & Stones, S.R. (2013). Blogging for biodiversity. Unpublished oral presentation for: BIOL10000 Academic Tutorials, 28 April 2013.
  16. Costello, S., Edwards, O., Heeney, N., Nelson, J., Owen, E., Rosher, C. & Stones, S.R. (2012). Silent assassins: Cone snails. Unpublished poster presentation for: BIOL10000 Academic Tutorials, 04 December 2012.
  17. Stones, S.R. (2012). The war against bacterial resistance. Unpublished oral presentation for: BIOL10000 Academic Tutorials, 24 November 2012.

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