Listening to patients, for the patients: The COVAD Study—Vision, organizational structure, and challenges

Joshi M, Darooka N, Saha S, Dyball S, Sen P, Yaadav P, Javaid M, Kadam E, Shinjo SK, Dey D, Cavagna L, Makol A, Gutiérrez CET, Caballero Uribe CV, Kuwana M, Burmester GR, Ziade N, Wincup C, Andreoli L, Parodis I, Tan AL, Guillemin F, Knitza J, Wang G, Dalbeth N, Velikova T, Gracia-Ramos AE, Nikiphorou E, Day J, Chinoy H, Aggarwal R, Agarwal V, Gupta L (2024)

Publication Type: Journal article

Publication year: 2024

Journal

Book Volume: 27

Article Number: e15161

Journal Issue: 5

DOI: 10.1111/1756-185X.15161

Abstract

Background: The pandemic presented unique challenges for individuals with autoimmune and rheumatic diseases (AIRDs) due to their underlying condition, the effects of immunosuppressive treatments, and increased vaccine hesitancy. Objectives: The COVID-19 vaccination in autoimmune diseases (COVAD) study, a series of ongoing, patient self-reported surveys were conceived with the vision of being a unique tool to gather patient perspectives on AIRDs. It involved a multinational, multicenter collaborative effort amidst a global lockdown. Methods: Leveraging social media as a research tool, COVAD collected data using validated patient-reported outcomes (PROs). The study, comprising a core team, steering committee, and global collaborators, facilitated data collection and analysis. A pilot-tested, validated survey, featuring questions regarding COVID-19 infection, vaccination and outcomes, patient demographics, and PROs was circulated to patients with AIRDs and healthy controls (HCs). Discussion: We present the challenges encountered during this international collaborative project, including coordination, data management, funding constraints, language barriers, and authorship concerns, while highlighting the measures taken to address them. Conclusion: Collaborative virtual models offer a dynamic new frontier in medical research and are vital to studying rare diseases. The COVAD study demonstrates the potential of online platforms for conducting large-scale, patient-focused research and underscores the importance of integrating patient perspective into clinical care. Care of patients is our central motivation, and it is essential to recognize their voices as equal stakeholders and valued partners in the study of the conditions that affect them.

Authors with CRIS profile

Involved external institutions

King's College Hospital (KCH) United Kingdom (GB) Università degli Studi di Brescia Italy (IT) Karolinska University Hospital / Karolinska Universitetssjukhuset Sweden (SE) NIHR Leeds Musculoskeletal Biomedical Research Unit (LMBRU) United Kingdom (GB) APEMAC Laboratory / Adaptation, mesure et évaluation en santé. Approches interdisciplinaires France (FR) China-Japan Friendship Hospital China (CN) University of Auckland New Zealand (NZ) Aleksandrovska University Hospital / университетска болница "Александровска" Bulgaria (BG) Instituto Mexicano del Seguro Social Mexico (MX) King’s College London United Kingdom (GB) Royal Melbourne Hospital (RMH) Australia (AU) Byramjee Jeejeebhoy Government Medical College & Sassoon General Hospital India (IN) King Edward Memorial Hospital and Seth G.S. Medical College / கிங் எட்வர்ட் நினைவு மருத்துவமனை,राजा एड्वर्ड स्मारक रुग्णालय व सेठ गोवर्धनदास सुंदरदास वैद्यकीय महाविद्यालय India (IN) Mymensingh Medical College / ময়মনসিংহ মেডিকেল কলেজ Bangladesh (BD) Maulana Azad Medical College (MAMC) India (IN) Maharashtra Institute of Medical Sciences and Research India (IN) Aga Khan University (AKU) / آغا خان یونیورسٹی‎ Pakistan (PK) University of São Paulo / Universidade de São Paulo (USP) Brazil (BR) University of Ghana Ghana (GH) Università degli Studi di Pavia Italy (IT) Mayo Clinic United States (USA) (US) Pontifical Xavierian University / Pontificia Universidad Javeriana Colombia (CO) Universidad del Norte Colombia (CO) Charité - Universitätsmedizin Berlin Germany (DE) University of Manchester United Kingdom (GB) Sanjay Gandhi Post Graduate Institute of Medical Sciences (SGPGIMS) India (IN) University of Pittsburgh United States (USA) (US) Université Saint-Joseph (USJ) / جامعة القديس يوسف / Սուրբ Ժոզեֆի համալսարան Lebanon (LB)

How to cite

APA:

Joshi, M., Darooka, N., Saha, S., Dyball, S., Sen, P., Yaadav, P.,... Gupta, L. (2024). Listening to patients, for the patients: The COVAD Study—Vision, organizational structure, and challenges. International Journal of Rheumatic Diseases, 27(5). https://doi.org/10.1111/1756-185X.15161

MLA:

Joshi, Mrudula, et al. "Listening to patients, for the patients: The COVAD Study—Vision, organizational structure, and challenges." International Journal of Rheumatic Diseases 27.5 (2024).

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