Background/Purpose: I am a person living with Psoriatic Arthritis (PsA) since the age of 20. I have spent decades working in advocacy. On my ‘good days,’ I focus on outreach to change national health policy. I have participated in various advisory boards, most recently in the GoodCare Campaign for PsA, a global, patient-driven project to address unmet needs in the PsA community.  Having experienced the challenges patients face—misdiagnosis, delayed treatment, lack of awareness, and isolation,  has motivated me to contribute to initiatives that bridge the gap between lived experience and clinical care.

Intervention: The GoodCare Campaign for PsA project was launched by the International Federation of Psoriasis Associations (IFPA) in 2022 to raise awareness of the need for PsA treatment guidelines and their integration into care pathways. I served on the steering committee helping to ensure that the patient voice remained central. Together with patients, clinicians and member associations, we co-created tools like the lived-experience illustration booklets, webinars, podcasts, social media materials, communication guides and a downloadable “treat-to-target” patient checklist. These resources support early symptom recognition and help patients, and their loved ones, navigate conversations with healthcare providers. Materials were translated into 9 languages and shared in global campaigns such as World Psoriasis Day, World Arthritis Day, and at international congresses including the European League Against Rheumatism (EULAR) and American College of Rheumatology (ACR).

Maintenance: Since its launch, the project has achieved measurable reach. The resources were shared globally via live podcasts recorded at major congresses reaching listeners in over 25 countries. A global survey conducted by IFPA showed over 50% of organizations advocating for people living with PsA had received and used the co-created materials – especially in under-resourced areas. Many, including myself, have emphasized the need for culturally adaptable formats to make the content inclusive. A key outcome was an engaging webinar with a rheumatologist exploring how treatment guidelines can be used as patient education tools.

Quality of Life: Co-leading this project has been personally empowering. Seeing patient insights transformed into tools and educational content gives me hope. Knowing my peers feel less alone has deepened my resilience and commitment, furthermore, sharing tailored resources with the medical community and advocating for shared decision-making is impactful. Among the many meaningful conversations I have been part of, one that stands out is this: Importance of shared decision making around therapeutic choice

Takeaway: This project shows the power of patient-physician collaboration.  I encourage patient leaders and healthcare professionals to adopt co-creation models, use shared decision-making tools and embrace communication strategies that work for both. This will not just change clinical outcomes—it changes lives.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/lived-experience-in-action-how-co-creating-a-psoriatic-arthritis-project-empowered-my-journey-as-a-patient-advocate/