When my daughter Ada was an infant, a cardiologist told me that she needed open heart surgery, the sooner the better. Ada had been born with a small hole in her heart (a VSD), which, the doctor said, could stunt her growth and potentially cause heart failure or brain damage.
I’m grateful for modern science and medicine, but the thought of Ada’s tiny chest under the knife, the risks of anesthesia, infection, medical error, and, at a minimum, a full torso scar, terrified me.
Patient engagement changed my perspective
Ten years ago I was already deeply committed professionally to patient engagement supported by digital health, an idea that was far from mainstream at the time.
I had set up a Telemedicine Task Force for the Federal Communications Commission and helped to develop a framework for nationwide health information sharing at the Markle Foundation. Then I went out on my own to consult for others on how to engage consumers and patients by leveraging technology.
The more I learned, the more I saw the mostly untapped role patients could play in improving their own health. Rather than merely following their doctors’ orders, patients could be actively engaged in defining their own health goals and achieving better outcomes by using digital information and tools.
Suddenly, here I was, with my own baby in my arms, under pressure to put her through open heart surgery, but wondering if there might be another option. I was inspired by the pioneering patients and care partners whom I’d seen leverage technology to change the course of their health journeys. So I followed their lead.
For my family, patient engagement meant using the Internet to research baby Ada’s condition and to connect with other families who had kids with VSDs, one of which even invited me and my husband into their home to learn about their experience with surgery. We also rented a hospital-grade scale to weigh and record Ada’s weight before and after each feeding.
We found that Ada, though light by American standards (a key justification for surgery according to our cardiologist), was much closer to the average weight of babies in Europe. Since my husband and I had both been unusually lightweight growing up (one girl called me “skinny wrists,” while my husband had been compared to a toothpick!), we thought a low weight might not be such a big deal in the context of our own histories and mixed European roots, especially since Americans tend toward being overweight.
Even more importantly, we saw that Ada showed no signs of the fatigue, lethargy, or weakness that could indicate that the VSD was impacting her ability to grow.
The description of patient engagement laid out by the Society for Participatory Medicine’s Manifesto is consistent with what we did, including asking questions, voicing concerns, doing research, and reaching out to others for help.
Why patient engagement is so critical
There’s a compelling logical case for engaging in your own health, both in the course of everyday life and in navigating the healthcare system. Everyday behaviors shape 40% to 50% of a person’s health over the course of a lifetime, while healthcare is responsible for only about 10%. Using digital tools to improve your diet, exercise, and sleep, for example, makes sense because it’s now possible to track and adjust factors that were much harder to measure in the past.
When it comes to healthcare, you can use technology to identify and address possible errors in your medical record and co-design a plan for your care that reflects your personal priorities. Engaged patients have improved health outcomes.
Patient engagement also resonates with me emotionally. It makes society less hierarchical, more egalitarian. The idea that every person has a voice and can make a difference in the course of his or her own life and contribute to something bigger resonates for me on a visceral level.
But what if your doctor doesn’t support you?
When I shared our findings and concerns with the cardiologist, she didn’t take them seriously. Although I don’t believe she had any ill-intent, it did not escape me that: 1.) surgery was her specialty (and thus the main tool she used to address patient problems), and 2.) her hospital was in financial trouble, which I happened to learn from the news. With the average open heart surgery for kids costing more than $50,000 at the time, it struck me that her best interests might not be aligned exactly with my family’s.
My husband and I researched and chose another institution, where we found a cardiologist who listened attentively—to our daughter’s heart, to our concerns, and to the stories the data we’d tracked were telling. He was in favor of watching and waiting, which is the path we chose. If your doctor isn’t a good fit, find a new one.
How Things are Working Out for My Family
Ten years later, my husband and I still take Ada for periodic checkups with the second cardiologist. Her heart is strong. The only constraint on her life from the VSD is that she can’t scuba dive, because it could cause complications due to the underwater pressure. That’s a small price to pay to avoid the risk and trauma of open heart surgery in the first year of life.
Professionally, I’ve gone much deeper into supporting patient and consumer engagement in health. I’ve held leadership roles in the federal government at the Office of the National Coordinator (ONC), and in the private sector at Carium, a tech company which has built a powerful telehealth platform for collaboration between patients and providers.
During this time, the digital health landscape has grown up dramatically, just like Ada. There have been billions of dollars invested in digital health, thousands of new products and services, and considerable transformation of the healthcare system, one of the best examples of which is the rapid switch to virtual health delivery that took place during the early days of the COVID-19 pandemic.
Digital information can make the invisible visible, and allow us to make human connections as we need to in real time. Still, there is a great deal to be done to help consumers and patients take full advantage of this rapidly shifting landscape.
Which brings to me my next act: I recently launched AdaRose, which I see as the next chapter in helping patients and consumers take charge of their own health. Women make 80% of healthcare decisions in this country, and AdaRose is a community that helps us, as informal “Chief Health Officers” for families, leverage new apps, products, and services, to make that process easier and more fun. The name AdaRose was inspired by my family’s engagement in the health journey of our baby, who has blossomed into a thriving tween.
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