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.

 
takeaways

  • 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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