Patients and Caregivers Leveraging AI to Improve Their Health Care Journey: Case Study and Lessons Learned

Artificial intelligence (AI) is increasingly integrated into everyday life. Yet in health care, patients and families are challenged to understand how AI may be helpful. As a result, real-world patient stories remain scarce. Generative AI can serve as a learning partner to help patients interpret complex medical information, prepare for appointments, and navigate care decisions. A case study is presented from the perspective of a caregiver and a clinician colleague, describing how one family used generative AI (ChatGPT; OpenAI) to better understand test results, possible diagnoses and treatments, prepare for visits, and summarize and share information with an extended care team. This paper also shares tips and lessons learned with others navigating similar health care challenges. A first-hand account of family interactions with ChatGPT is described during a period between diagnostic imaging and surgical consultation. Real-world use of AI by a caregiver is showcased, including strategies used to understand and summarize health record data, querying AI using medical documents, and resulting actions taken by the family. Using the case study as a springboard, the authors provide a separate section to share lessons learned for patients and caregivers in their use of AI. The family reported benefits of AI, including the ability to comprehend health information by translating medical records into patient-friendly language; to emotionally process and prepare for visits; to research diagnoses and treatments; to streamline communication with care teams by using concise patient summaries; and to feel more empowered to take timely, informed action. Generative AI can serve as a valuable companion tool for patients and caregivers navigating complex medical information. By translating results, providing education about diagnoses and treatment options, and helping prepare for visits, AI may reduce care delivery delays and raise family confidence in decision-making. However, limitations exist, and patients and caregivers need to validate AI output to ensure accuracy and privacy.