Patient Perspectives on Artificial Intelligence (AI) in Healthcare and Health Literacy

United Porphyrias Association is working with Dr. Richard Godby, a hematologist, to learn more about how patients and caregivers are using artificial intelligence (AI) to learn more about healthcare, rare diseases, and blood disorders, including the porphyrias.

We’d like to learn more about how people are using these tools, what questions they are asking, or what kind of help would be most useful.

What we learn could help guide future education, increase awareness, and support the development of practical tools such as prompting guides, disease-specific chatbots, and other helpful resources.

Healthcare providers, institutions, and organizations want to support patients and families in using AI in safe, helpful, and meaningful ways. This short, anonymous survey will help us better understand those needs.