{
  "abstract": "Introduction The Patient Education Initiative positions Scleroderma patients not as subjects of study, but as expert educators delivering their lived experiences to health professional students, addressing a persistent gap in education: the patient lived experience. The initiative aims to engage schools of pharmacy, medicine, nutrition, PT/OT, Social Work, and Nursing to reach students in all fields in which practitioners may encounter patients with scleroderma. Delayed diagnosis, inadequate symptom management, and insufficient interdisciplinary collaboration underscore the need for reform in scleroderma-related health professional education.Material and Methods The initiative integrates scleroderma patients as trained educators. Following completion of a training course titled The Art of Educating, patient educators participate in classroom sessions, using personal narratives to illustrate the following struggles. These include securing accurate diagnosis and appropriate care, the psychological and physical impact of the disease, and the navigational skills needed to overcome disease-related adversity. This initiative explores how patients offer insights that go beyond textbook based learning. Content will be customized to the areas of greatest relevance and applicability for each particular health profession. Four key insights can affect the way health professionals learn about scleroderma:Key Insight 1: Identification of key anxiety drivers for patients—are healthcare providers asking the right questions?Key Insight 2: The psychological impact of provider messaging—how much discouragement do patients receive from those they turn to for help?Key Insight 3: What are the innovative patient-led ‘work-arounds’ when pharmacologic options fall short?Key Insight 4: What is the importance of provider encouragement in connecting patients to peer support networks?Results This initiative is intended not only to empower patients as educators but also to inspire rising healthcare students to be more reflective, responsive, and empathetic. Future initiative assessments will include qualitative analysis of open-ended responses and interviews, as well as quantitative survey data. Feedback loops from students, faculty, and patient educators will enable ongoing refinement. Virtual delivery of the lectures is being explored to expand reach and reduce barriers for patient educators. As the initiative scales, future goals include academic credit opportunities, alignment with accreditation standards, and sustained faculty engagement.Conclusions The Patient Education Initiative is a promising, innovative model for embedding the patient voice into healthcare education by bridging the divide between healthcare students and real-world patient experiences. The initiative is intended to promote early recognition of scleroderma, better understanding of disease impact, and more collaborative, patient-centered care.",
  "authors": [
    {
      "affiliations": [
        "Steffens Scleroderma and Degos Disease Foundation, Albany, USA"
      ],
      "name": "Amy Gietzen"
    },
    {
      "affiliations": [
        "Steffens Scleroderma and Degos Disease Foundation, Albany, USA"
      ],
      "name": "Hannah Bowen"
    },
    {
      "affiliations": [
        "Steffens Scleroderma and Degos Disease Foundation, Albany, USA",
        "Albany Medical College, Albany, USA"
      ],
      "name": "Lee Shapiro"
    },
    {
      "affiliations": [
        "Steffens Scleroderma and Degos Disease Foundation, Albany, USA"
      ],
      "name": "Steve Rosenblum"
    }
  ],
  "title": "P.320 Beyond the white coat: patient education initiative",
  "uid": "47205a61-2eaa-56fe-807c-eae511632080"
}