At the Infusion Access Foundation, we’re always looking for ways to better support patients and the communities we serve. Recently, our Advocacy Associate, Sam Miller, and I had the opportunity to attend Takeda’s Collaborating to Care+ meeting, where leaders from nonprofit organizations, healthcare, and the pharmaceutical industry gathered to discuss a topic that is rapidly shaping the future of healthcare: artificial intelligence (AI). The conversation explored how AI is already being used in medicine, how pharmaceutical companies and healthcare providers are incorporating it into research and care delivery, and how nonprofit organizations like ours might use these tools to strengthen our missions.
One of the most valuable parts of the meeting was the open dialogue among smaller patient advocacy organizations. Many groups shared both excitement and hesitation about AI. On one hand, these tools can help nonprofits work more efficiently, analyze complex information, and amplify patient voices in policy discussions. On the other hand, participants acknowledged that AI is still evolving, and we must be thoughtful about how it’s used. We also discussed the reality that AI is already being used across the healthcare system—including by insurance companies—which makes it even more important for patient organizations to understand the technology and ensure it is used responsibly.
Another important theme was the idea that AI is only as good as the information it learns from. These systems rely on data that people input and on research that already exists. In healthcare, we know that research and clinical data have historically contained gaps and biases, particularly for women and people of color living with chronic illnesses. If those biases exist in the data, AI can unintentionally repeat or amplify them. In other words, it can become a “garbage in, garbage out” problem. That led to thoughtful discussion about how patient organizations can help ensure that the information feeding these tools is more balanced, inclusive, and reflective of real patient experiences.
The meeting ended with a shared interest in continuing to work together on these challenges. Groups discussed collaborating to help protect patient information and stories as AI tools become more widely used. We also talked about the importance of ensuring that AI summaries appearing in search engines are pulling accurate information from trusted patient advocacy websites, rather than unreliable sources. Finally, there was interest in exploring a coordinated legislative effort to establish clearer guidelines for how AI can be used in patient care and insurance decision-making. As these conversations continue, our goal is to ensure that patients remain at the center of how this technology evolves.
As AI tools become more common, many patients are beginning to use them to learn about their diagnoses, conditions, and treatment options. These tools can be helpful for explaining complex medical topics or helping you think of questions to ask your doctor—but it’s important to use them carefully:
- Do use AI for general education about your condition or treatment options.
- Do use it to help generate questions you may want to ask your healthcare provider.
- Do double-check information that you get from AI with trusted medical sources or your care team.
- Don’t upload personal health information or full medical records into AI tools, since privacy protections are still evolving.
- Don’t rely on AI summaries alone when making decisions about your health.
- Don’t use AI as a replacement for medical appointments or consultations with your healthcare provider.
Technology can be a helpful guide, but your care team remains the most important partner in your health journey.
Alicia Barron, Executive Director of Infusion Access Foundation