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Patient and Public Involvement in Rheumatic and Musculoskeletal Research

Article collection published

BMC Rheumatology and BMC Musculoskeletal Disorders called for papers on Patient and Public Involvement (PPI) in rheumatic and musculoskeletal research. This Article collection aimed to prompt prioritization of patient perspectives and create a constructive learning experience to more meaningfully integrate patient and public partners into the healthcare cycle.

Patient and public involvement (PPI) is research being carried out by researchers alongside members of the public rather than to, about, or for them (National Institute for Health Research, UK). Patients and the public may be research partners or researchers themselves. PPI as a concept is not new, and it has gained support in recent years due to increased awareness and commitments placed on researchers by scientific societies and funding agencies. Musculoskeletal and rheumatic healthcare practitioners have played a leading role in developing strategies to engage patients in the research process. Yet many active researchers still believe that they do not have the knowledge or resources to contact, plan or manage patient involvement. 

In this Article collection, patient/public referees were commissioned as authors and also engaged to provide a peer-review report, which can be viewed in each article's Peer Review reports. Authors were encouraged to co-produce alongside the public, as well as supplementing their contributions with a plain language summary, statement of inclusive language and the GRIPP-2 checklist.

Publication date: May 31, 2023.

Meet the Collection Editors

Prof Adewale Abebajo MBE

Professor Adebajo MBE is a professor of health services research at the University of Sheffield and a patient and public involvement advisor and a member of the Management Board of the National Centre for Engagement and Dissemination of the United Kingdom National Institute for Health Research.  He is also Deputy Editor of a Springer Rheumatology journal.

Angie Botto-van Bemden PhD, LAT,  ATC, CSCS

Dr. Angie Botto-van Bemden is a patient advocate first and foremost. Angie is also the CEO/Founder of Musculoskeletal Research International and Clinical Research Experts, leading patient access to better treatment options by focusing on what matters most– the voice of the patient!

Ciarán Martin Fitzpatrick PhD

New Content ItemCiaràn is a Senior Editor at BMC Medicine. Previously a BMC Series Editor (2019 - 2022), he also researched on preclinical model of psychiatry and neuropharmacology.  Nowadays, his main passions are open science and championing patient and public engagement in research. With the help of patient representatives and the BMC Rheumatology Editorial Board, he launched this Call for Papers and co-created inclusive language guidance ready for adoption across Springer Nature books and journals. 

  1. Patient and public involvement is an idea whose time has firmly come. It is the views of these Guest Editors that it is the right thing to do morally and improves research quality and applicability.

    Authors: Angie Botto-van Bemden, Adewale O. Adebajo and Ciarán Martin Fitzpatrick
    Citation: BMC Rheumatology 2023 7:12
  2. Patient and public involvement (PPI) in every aspect of research will add valuable insights from patients’ experiences, help to explore barriers and facilitators to their compliance/adherence to assessment and...

    Authors: Ashokan Arumugam, Lawrence Rick Phillips, Ann Moore, Senthil D. Kumaran, Kesava Kovanur Sampath, Filippo Migliorini, Nicola Maffulli, Bathri Narayanan Ranganadhababu, Fatma Hegazy and Angie Botto-van Bemden
    Citation: BMC Rheumatology 2023 7:2
  3. Aotearoa New Zealand (AoNZ) has no agreed models for rheumatology service provision in government-funded health care. We aimed to describe what people with inflammatory rheumatic diseases who have used rheumat...

    Authors: Rachel Ngan Kee, Valerie Milne, Nicola Dalbeth and Rebecca Grainger
    Citation: BMC Rheumatology 2023 7:1
  4. Systemic lupus erythematosus or lupus is a severe chronic autoimmune disorder that disproportionately impacts young African Americans. Increasing lupus awareness in this high-risk group may be an effective app...

    Authors: Edith M. Williams, Joni Nelson, Diane Francis, Keesha Corbin, Gary Link, Tomika Caldwell and Gary Gilkeson
    Citation: BMC Rheumatology 2022 6:92
  5. Although drug treatment strategies for rheumatoid arthritis (RA) are relatively well established, there is a paucity of evidence on the treatment in older patients. The purpose of this study is to build a regi...

    Authors: Masayo Kojima, Yutaka Kawahito, Takahiko Sugihara, Toshihisa Kojima, Ryozo Harada, Shintaro Hirata, Motomu Hashimoto, Toshihiko Hidaka, Hajime Ishikawa, Hiromu Ito, Mitsumasa Kishimoto, Yuko Kaneko, Kazuo Matsui, Toshihiro Matsui, Isao Matsushita, Akio Morinobu…
    Citation: BMC Rheumatology 2022 6:90
  6. Involving patients and members of the public in healthcare planning is beneficial for many reasons including that the outcomes focus on topics relevant to service users. The National Early Inflammatory Arthrit...

    Authors: Sarah Oyebanjo, Paul Amlani-Hatcher, Ruth Williams, Roger Stevens, Tom Esterine, Kate Wilkins, Clare Jacklin, Jill Hamilton, Rosie Fairfax and Heidi Lempp
    Citation: BMC Rheumatology 2022 6:89
  7. Juvenile idiopathic arthritis (JIA) is a childhood autoimmune disease that causes swelling and pain in at least one joint. Young people with JIA experience symptoms that persist into adulthood, and thus will u...

    Authors: Gillian R. Currie, M. Harris, L. McClinton, N. Trehan, A. Van Dusen, M. Shariff, T. Kuzmyn and D. A. Marshall
    Citation: BMC Rheumatology 2022 6:85
  8. Advances in musculoskeletal (MSK) research have been successfully curated into widely endorsed evidence-based recommendations and guidelines. However, there continues to exist significant variations in care an...

    Authors: Opeyemi O. Babatunde, Shoba Dawson, June Brammar, Linda Parton, Krysia Dziedzic and Adewale O. Adebajo
    Citation: BMC Rheumatology 2022 6:84
  9. Rheuma Tolerance for Cure (RTCure) is a five-year international collaboration between academia, industry and patients/members of the public. It focuses on developing approaches to predict the onset of rheumato...

    Authors: Savia de Souza, Eva C. Johansson, Susanne Karlfeldt, Karim Raza and Ruth Williams
    Citation: BMC Rheumatology 2022 6:83
  10. For many children and young people (CYP) with paediatric rheumatic conditions, glucocorticoid medications and their associated side-effects have a substantial impact on disease experience. Whilst there are phy...

    Authors: S. Singhal, E. M. D. Smith, L. Roper and C. E. Pain
    Citation: BMC Rheumatology 2022 6:80
  11. A treat-to-target (T2T) approach, where treatment is escalated until a specific target is achieved, and re-escalated if the target is lost, has been proposed as a strategy to improve Childhood Systemic Lupus E...

    Authors: R. S. Elliott, E. Taylor, J. Ainsworth, J. Preston and E. M. D. S. Smith
    Citation: BMC Rheumatology 2022 6:69
  12. Empirical evidence for effective patient-researcher collaboration in basic research is lacking. This study aims to explore good working models and impact of patient involvement in basic rheumatology research a...

    Authors: Maarten P. T. de Wit, M. I. Koenders, Y. Neijland, F. H. J. van den Hoogen, P. M. van der Kraan, F. A. J. van de Loo, H. Berkers, M. Lieon, A. van Caam and C. van den Ende
    Citation: BMC Rheumatology 2022 6:66
  13. In people with knee osteoarthritis (OA), ongoing exercise participation, particularly with strengthening exercises, is central to management. Patient adherence to prescribed exercise typically declines once co...

    Authors: Rana S. Hinman, Rachel K. Nelligan, Penny K. Campbell, Alexander J. Kimp, Bridget Graham, Mark Merolli, Fiona McManus, Karen E. Lamb and Kim L. Bennell
    Citation: BMC Musculoskeletal Disorders 2022 23:874
  14. Research priority setting is a useful approach to decide which unanswered questions are most worth trying to solve through research. The aim is to reduce bias in the research agenda. Traditionally, research wa...

    Authors: Emma R. Dorris, Stacey Grealis, Karmen Kegl, Norelee Kennedy, Louise Larkin, Brian Lynch, Ailis Moran, Justine O’Brien, Stephanie Skeffington, Kayleigh Slater, Rebecca Ward and Allison Willett
    Citation: BMC Rheumatology 2022 6:55
  15. Patient participation is highlighted as an important facilitator for patient-centered care. Patient participation organised as patient advisory boards (PABs) is an integral part of health care institutions in ...

    Authors: Joachim Sagen, Elin Børøsund, Ann Elisabeth Simonsen, Andreas Habberstad, Ingvild Kjeken, Hanne Dagfinrud and Rikke Helene Moe
    Citation: BMC Musculoskeletal Disorders 2022 23:738
  16. The evidence-based interventions of exercise and education have been strongly recommended as part of prominent clinical guidelines for hip and knee osteoarthritis (OA) for more than ten years. Despite the weal...

    Authors: Clodagh M. Toomey, Norelee Kennedy, Anne MacFarlane, Liam Glynn, John Forbes, Soren T. Skou and Ewa M. Roos
    Citation: BMC Musculoskeletal Disorders 2022 23:643
  17. Patient engagement is recommended for improving health care services, and to evaluate its organisation and impact appropriate, and rigorously evaluated outcome measures are needed.

    Authors: Andrew Garratt, Joachim Sagen, Elin Børøsund, Cecilie Varsi, Ingvild Kjeken, Hanne Dagfinrud and Rikke Helene Moe
    Citation: BMC Musculoskeletal Disorders 2022 23:556
  18. In Sweden, core treatment for osteoarthritis is offered through a Supported Osteoarthritis Self-Management Programme (SOASP), combining education and exercise to provide patients with coping strategies in self...

    Authors: Karin Sturesdotter Åkesson, Anne Sundén, Kjerstin Stigmar, Cecilia Fagerström, Teresa Pawlikowska and Eva Ekvall Hansson
    Citation: BMC Musculoskeletal Disorders 2022 23:555
  19. Hip osteoarthritis (OA) is a leading cause of musculoskeletal pain. Exercise is a core recommended treatment. Most evidence is based on muscle-strengthening exercise, but aerobic physical activity has potentia...

    Authors: Michelle Hall, Kim Allison, Rana S. Hinman, Kim L. Bennell, Libby Spiers, Gabrielle Knox, Melanie Plinsinga, David M. Klyne, Fiona McManus, Karen E. Lamb, Ricardo Da Costa, Nicholas J. Murphy and Fiona L. Dobson
    Citation: BMC Musculoskeletal Disorders 2022 23:361
  20. Over recent years the lack of patient involvement in the design, set-up and implementation of clinical research studies has been well recognised; as such there has been a drive within research communities to i...

    Authors: Hannah Jethwa, Melanie Brooke, Andrew Parkinson, Emma Dures and Nicola J. Gullick
    Citation: BMC Rheumatology 2022 6:13
  21. Despite the proven benefits of exercise rehabilitation for numerous health conditions, musculoskeletal injuries and recovery from surgery, patient adherence to such programs is reported to often be less than 3...

    Authors: Junsheng L. Teo, Zhen Zheng and Stephen R. Bird
    Citation: BMC Sports Science, Medicine and Rehabilitation 2022 14:18
  22. Given the health and economic burden of fractures related to osteoporosis, suboptimal adherence to medication and the increasing importance of shared-decision making, the Improvement of osteoporosis Care Organ...

    Authors: Dennis Cornelissen, Annelies Boonen, Silvia Evers, Joop P. van den Bergh, Sandrine Bours, Caroline E. Wyers, Sander van Kuijk, Marsha van Oostwaard, Trudy van der Weijden and Mickaël Hiligsmann
    Citation: BMC Musculoskeletal Disorders 2021 22:913
  23. The “parkrun: running or volunteering for everyone” (PROVE) project was an example of a community-based physical activity and volunteering initiative for people living with long-term health conditions in England....

    Authors: Helen Quirk and Steve Haake
    Citation: BMC Sports Science, Medicine and Rehabilitation 2021 13:123
  24. Total knee replacement (TKR) is one of the most commonly performed routine procedures in the world. Prognostic studies indicate that the number of TKR will further increase constituting growing burden on healt...

    Authors: Toni Lange, Stefanie Deckert, Franziska Beyer, Waldemar Hahn, Natascha Einhart, Martin Roessler, Martin Sedlmayr, Jochen Schmitt and Jörg Lützner
    Citation: BMC Musculoskeletal Disorders 2021 22:783
  25. Despite similar outcomes for surgery and conservative care, the number of surgeries to treat rotator cuff related shoulder pain has increased. Interventions designed to enhance treatment expectations for conse...

    Authors: Heather Myers, Francis Keefe, Steven Z. George, June Kennedy, Ashley Davis Lake, Corina Martinez and Chad Cook
    Citation: BMC Musculoskeletal Disorders 2021 22:727
  26. Research on adherence interventions in rheumatology is limited by methodological issues, particularly heterogeneous outcomes. We aimed to describe researchers’ experiences with conducting interventional studie...

    Authors: Shahrzad Salmasi, Ayano Kelly, Susan J. Bartlett, Maarten de Wit, Lyn March, Allison Tong, Peter Tugwell, Kathleen Tymms, Suzanne Verstappen and Mary A. De Vera
    Citation: BMC Rheumatology 2021 5:26
  27. Annually in the UK, 40,000–90,000 people are involved in a traumatic incident. Severity of injury and how well people recover from their injuries varies, with physiotherapy playing a key role in the rehabilita...

    Authors: N. Middlebrook, N. R. Heneghan, D. Falla, L. Silvester, A. B. Rushton and A. A. Soundy
    Citation: BMC Musculoskeletal Disorders 2021 22:163
  28. Globally, osteoarthritis (OA) is the third condition associated with disability. There is still poor treatment in OA but science holds the key to finding better treatments and a cure. It is essential to learn ...

    Authors: Marianna Vitaloni, Angie Botto-van Bemden, Rosa Sciortino, Xavier Carné, Maritza Quintero, Pedro Santos-Moreno, Rolando Espinosa, Oscar Rillo, Jordi Monfort, Francisco de Abajo, Elizabeth Oswald, Marco Matucci, Patrick du Souich, Ingrid Möller, Montserrat Romera Baures, Arlene Vinci…
    Citation: BMC Musculoskeletal Disorders 2020 21:727
  29. Inflammatory Arthritis is characterized by lifelong medical treatment and an unpredictable trajectory because of the fluctuating nature of the diseases. Proactive disease management is recommended, which inclu...

    Authors: Bianca Bech, Jens Jørgen Lykkegaard, Tine Lundbak, Heidi Morsø Schrøder, Line Mette Birkeland, Mette Lund Schlyter, Lotte Hanne Hansen, Lillian Dalsgaard and Bente Appel Esbensen
    Citation: BMC Rheumatology 2020 4:44
  30. Knee osteoarthritis (KOA) is a prevalent form of chronic joint disease associated with functional restrictions and pain. Activity limitations negatively impact social connectedness and psychological well-being...

    Authors: Marianna Vitaloni, Angie Botto-van Bemden, Rosa Maya Sciortino Contreras, Deborah Scotton, Marco Bibas, Maritza Quintero, Jordi Monfort, Xavier Carné, Francisco de Abajo, Elizabeth Oswald, Maria R. Cabot, Marco Matucci, Patrick du Souich, Ingrid Möller, Guy Eakin and Josep Verges
    Citation: BMC Musculoskeletal Disorders 2019 20:493