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Abstract
Introduction Patients with rare diseases often encounter difficulties accessing and comprehending medical information due to the complexity and rarity of their conditions. This communication barrier between medical professionals and patients can impede patient engagement and informed decision-making. Erythropoietic protoporphyria (EPP) exemplifies this challenge, lacking sufficient patient-centric research.
Objectives Our initiative seeks to demystify medical research in the porphyrias by translating complex publications into patient-friendly summaries, written at an 8th-9th grade level. We aim to bridge the knowledge gap, enabling patients, caregivers, and non-specialists to access and understand the latest EPP research. Our goal is to foster patient engagement and involvement in their healthcare journey.
Methods We have developed a series of easy-to-understand summaries of recent porphyria research, reviewed and endorsed by the United Porphyrias Association’s Scientific Advisory Board. These summaries offer comprehensive insights into advancements while ensuring accessibility for patients and caregivers. Additionally, collaboration with healthcare providers ensures the utility of these summaries in facilitating improved doctor-patient communication.
Results Our initiative, ‘Summing UP,’ has received positive feedback from the porphyria patient community. Patients and caregivers appreciate the accessibility of the summaries, resulting in heightened engagement and informed decision-making. We observe increased patient interest in understanding and actively participating in their care plans.
Conclusions and Future Directions Accessible medical information is pivotal in enhancing patient engagement. Going forward, we aim to expand ‘Summing UP’ to cover a broader spectrum of rare diseases, ensuring more patients have access to relevant research. We will explore additional formats and platforms to enhance accessibility, such as videos, podcasts, and interactive webinars. Furthermore, ongoing collaboration with medical professionals will maximize the impact of our initiative on patient knowledge, engagement, and health outcomes.
Case Study in erythropoietic protoporphyria (EPP):
Published in Hepatology, July 2023
Summing UP, October 2023
Published in Chronic Liver Disease, February 2023
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