I'm a Patient. I'm a Caregiver. Can You Hear Me?

The HLTH2021 conference in Boston is one of the coolest events of the year. And while this brings to mind innovation and the forefront of science, people still need innovation at the lowest, most basic—as in fundamentally important—and low-tech levels.

So, who are these people, who need simple, low-tech solutions? All of us.

Marcus Osborne, senior vice president of Walmart Health, said that "most of the innovation goes toward people who have the most. I want to see innovation going toward people who have the least."

I’d like to add to that, at some point, when we are patients, we might feel like we’re the ones who have the least. It’s all of us. Or, it can be all of us. I'm not saying this in a belittling way, just an affirming one, because even the mighty may find themselves in circumstances that are taxing and difficult. We need all the help we can get.

And here is a great example: Arundhati Parmar, editor-in-chief at MedCity News, spoke of caring for her brother when he had cancer. She related the ordeal of being in the hospital with him, exhausted, and having doctors approach her, one after another, with questions. Five doctors, and an identical set of questions. “Why didn’t they record me?” she asked.

The official answer was because each doctor has different questions. (Not true.) The unofficial answer is because nobody takes a caregiver’s fatigue into account. It’s an invaluable resource which is too often overlooked.

This does not invoke a caregiver’s trust in the system.

Clearly, Parmar is highly educated and accomplished. But that made no difference. She was as frustrated as anybody else, and just as helpless.

The same goes for Maven founder and CEO Kate Ryder, who spoke of arriving at the 13th floor of a hospital facility in New York City to deliver her child. After answering her doctors’ multiple questions on her health, she had a trying delivery. She was then wheeled to the postpartum unit on the 12th floor, only to be asked the same questions again. Turns out that the EPIC systems of the two floors don’t integrate.

Solutions range from tackling interoperability to printing out the information when transitioning a patient. But they are yet to be found.

What these problems have in common is that the main person who agonizes over them is the patient. But they also come with a financial cost in terms of doctors’ and nurses’ time, and, less explicitly, in complications. Someone needs to start listening.

It took me almost 20 years of research in medical decision-making to realize this. In my book, Your Life Depends On It: What You Can Do to Make Better Choices about Your Health, I show how people make health and medical choices, and relationships and trust are the indispensable basis for this. Patients cannot do it on their own, and neither can physicians. But when the system listens, everybody wins.