Coffee & Community: Cutaneous Lymphoma Conversations
Coffee & Community: Cutaneous Lymphoma Conversations
Podcast Description
A podcast to bring together the many voices of the cutaneous lymphoma community to share both their experiences and knowledge about cutaneous lymphomas.
In each episode, we will dive into the unique stories and perspectives of our guests; exploring cutaneous lymphoma through their lens. No matter who you are, a person living with CL, a healthcare or industry professional, or simply someone interested in learning more - this podcast is for you.
Podcast Insights
Content Themes
Explores personal experiences and medical insights relating to cutaneous lymphomas, featuring topics such as patient advocacy, navigating the healthcare system, community support, diet, and mental health. Episodes, like Sheila J's journey, emphasize the impact of information and empowerment on living with chronic illness.
A podcast to bring together the many voices of the cutaneous lymphoma community to share both their experiences and knowledge about cutaneous lymphomas.
In each episode, we will dive into the unique stories and perspectives of our guests; exploring cutaneous lymphoma through their lens. No matter who you are, a person living with CL, a healthcare or industry professional, or simply someone interested in learning more – this podcast is for you.
summary
In this episode of Coffee and Community, host Holly Priebe speaks with Allison Fitzgerald, Director of Operations for GlobalSkin, about the GRIDD and PRIDD projects aimed at improving quality of life for individuals living with skin diseases, including cutaneous lymphoma. They discuss the importance of patient-centric data, the development of an app for tracking the impact of skin diseases, and the future plans for research and advocacy. The conversation also addresses patient privacy concerns and the significant role of mental health in managing skin conditions.
- To learn more about the CLFoundation’s participation in GlobalSkin’s GRIDD & PRIDD projects please visit our website at GlobalSkin | Cutaneous Lymphoma Foundation
- To review the seven publications produced and published by GlobalSkin visit their website at Resources & Publications
- To download and begin using the PRIDD app visit the PRIDD website at Download App | PRIDD
- Global Skin aims to turn qualitative data into quantitative data.
- The GRIDD project focuses on understanding the burden of dermatological diseases.
- PRIDD is a new measure that includes patient input.
- Patients need to communicate their full experience beyond physical symptoms.
- The PRIDD app allows patients to track their health and discuss it with providers.
- Healthcare providers need to be educated about the PRIDD app.
- Future research will utilize GRIDD and PRIDD data for advocacy.
- Mental health is a significant concern for patients with skin diseases.
- Patient participation in research is crucial for meaningful outcomes.
- Data security and privacy are prioritized in the app’s design.
Chapters
00:00 Introduction to Global Skin and GRID Projects
03:00 Understanding PRIDD and Its Importance
05:04 Using the PRIDD App for Patient Empowerment
07:53 Healthcare Provider Engagement and Education
11:31 Future Plans for Global Skin and GRID
14:24 Patient Privacy and Data Security Concerns
18:52 The Importance of Research Participation
22:02 Mental Health and the Burden of Skin Disease
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