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In this Viewpoint article, six patients and patient advocates discuss the role of the patient in rheumatology, the current unmet needs of patients and promising advances. By reflecting on their own lived experiences, the authors emphasize the integral role of patients for progress in the field.
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References
Fanouriakis, A. et al. EULAR recommendations for the management of systemic lupus erythematosus: 2023 update. Ann. Rheum. Dis. 83, 15–29 (2024).
Cornet, A. et al. Living with systemic lupus erythematosus in 2020: a European patient survey. Lupus Sci. Med. 8, e000469 (2021).
Cornet, A. et al. Experiences and unmet needs of persons living with systemic lupus erythematosus in Europe: Lupus Europe’s 2024 Swiss knife survey. Autoimmun. Rev. 24, 103838 (2025).
National Institutes of Health. NIH-Wide Strategic Plan for Autoimmune Disease Research. https://orwh.od.nih.gov/OADR-ORWH/Strategic-Planning-for-ADR (2025).
Sjögren’s Foundation. Living with Sjögren’s Patient Survey. https://sjogrens.org/living-with-sjogrens/patient-survey-results (2021).
Denton, C. P. et al. British Society for Rheumatology guideline for management of systemic sclerosis. Rheumatology 63, 2956–2975 (2024).
Del Galdo, F. et al. EULAR recommendations for the treatment of systemic sclerosis: 2023 update. Ann. Rheum. Dis. 84, 29–40 (2024).
Department of Health and Social Care. UK Rare Diseases Framework. https://www.gov.uk/government/publications/uk-rare-diseases-framework/the-uk-rare-diseases-framework (2021).
de Wit, M. et al. EULAR recommendations for the involvement of patient research partners in rheumatology research: 2023 update. Ann. Rheum. Dis. 83, 1443–1453 (2024).
Ministry of Health, Labour and Welfare. Treatment Guidelines for Antiphospholipid Syndrome, Eosinophilic Granulomatosis with Polyangiitis, Polyarteritis Nodosa, and Rheumatoid Vasculitis 2020 (2020).
Rare Autoimmune Rheumatic Disease Alliance (RAIRDA). Rare Care Matters Report. https://rairda.org/publication/report2025/ (2025).
Federation of European Scleroderma Associations (FESCA). Findings from the 2023 European Patient Survey. https://fesca-scleroderma.eu/european-patient-survey/ (2023).
Colomer-Lahiguera, S. et al. Patient and public involvement in cancer research: a scoping review. Cancer Med. 12, 15530–15543 (2023).
Howren, A. et al. Do individuals with inflammatory arthritis receive minimally adequate treatment for incident depression and anxiety: a population-based study. Arthritis Res. Ther. 27, 13 (2025).
Okochi, N. et al. Toward a frontier beyond the barriers of position and prejudice [abstract]. Arthritis Rheumatol. 75, PP15 (2023).
The Choice Research Lab. JIA Option Map. https://choiceresearchlab.ca/jia-option-map/ (accessed 4 September 2025).
Connelly, K. et al. Towards a novel clinical outcome assessment for systemic lupus erythematosus: first outcomes of an international taskforce. Nat. Rev. Rheumatol. 19, 592–602 (2023).
Connelly, K. et al. Domains for inclusion in a novel treatment response measure for systemic lupus erythematosus (TRM-SLE): results of a modified Delphi study. Lupus Sci. Med. 6, e001482 (2025).
Xiao, L. et al. Cryo-EM structures of the active NLRP3 inflammasome disc. Nature 613, 595–600 (2024).
Feng, S. et al. Mechanisms of NLRP3 activation and inhibition elucidated by functional analysis of disease-associated variants. Nat. Immunol. 26, 511–523 (2025).
Acknowledgements
N.O. would like to express heartfelt thanks to all the doctors and medical professionals for their support, first as a patient, and now as a researcher. In particular, N.O. is deeply grateful to M. Harigai and Y. Ishikawa for their continuous guidance and encouragement throughout the development of this work.
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Jeanette Andersen is 46 years old, lives in Denmark and was diagnosed with SLE in 2011. She is the chair of Lupus Europe, leader of the Lupus Europe Patient Advisory Network, an ERN ReCONNET patient representative and a steering committee member. She is also a leader for the Danish Lupus group, a EULAR PARE committee member and chair of the EULAR PARE education and research sub-committee.
Janet Church is the president and chief executive officer of The Sjögren’s Foundation and lives with SjD. She leads the foundation with a focus on supporting the four million individuals in the USA with SjD, educating HCPs in many specialties, investing in innovative research and advocating for all patients.
Seth Durrant is a patient advocate for the Autoinflammatory Alliance, and has been diagnosed with CAPS. He supports patients through online community activities and advocacy work. He is a PhD candidate at the University of California, Merced, where he studies innate immune proteins in the de Alba Lab.
Sue Farrington is chief executive officer of SRUK, president of FESCA, co-chair of RAIRDA UK, a member of the European Reference Network for Connective Tissue Diseases and the UK Rare Disease Forum.
Noriko Okochi is a certified public psychologist who works in both psychiatric and education settings. She conducts research on psychosocial support for individuals with rare diseases and their families at the Neuropsychiatric Research Institute. She is also executive director of the non-profit organization Rheumatic Disease and Vasculitis Support Network JAPAN.
Natasha Trehan is a graduate of the Translational and Molecular Medicine programme at the University of Ottawa and founded the global non-profit Take a Pain Check Foundation to support young people with rheumatic diseases. A trained patient researcher, she serves on multiple advisory boards and advances impactful healthcare research at leading institutions.
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N.T. is the executive director of Take a Pain Check Foundation, which has received grant support from Pfizer, Janssen, AbbVie, McMaster University, the Ontario Brain Institute, the Hospital of the University of Pennsylvania, Accord, UCB, Takeda, Augurex, Amgen, AstraZeneca and Organon. N.T. was a consultant for Janssen and AbbVie.
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Related links
Global Patient Charter for SLE: https://worldlupusfederation.org/a-charter-to-improve-care-for-sle-systemic-lupus-erythematosus/
LupusGTP: https://lupusgpt.org/
STRATA-FIT: https://strata-fit.eu
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Andersen, J., Church, J., Durrant, S. et al. The role of the patient in rheumatology. Nat Rev Rheumatol (2025). https://doi.org/10.1038/s41584-025-01303-z
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DOI: https://doi.org/10.1038/s41584-025-01303-z
