Lygeia is a consumer engagement expert in Washington, DC. She navigates barriers that separate tech companies, government, provider organizations, patient advocates, health insurers and other groups in order to make change happen at scale. Her favorite part of her work is collaborating with smart, passionate people, and meeting consumers who are using technology to manage and improve their health in novel or meaningful ways.
As often as possible, I like to start the day with a 6:00 am boot camp. I am part of a small group of neighbors that gathers in a local gym to work out together with a trainer. Sometimes we flip a massive truck tire up and down the length of the gym. My arms get sore! But especially given that I work on empowering consumers to be more active in their own health, it’s important to walk my talk, even though it can be really hard to get up and out the door in the morning.
I start my workday from my home office or at the local WeWork shared office space. I recently joined a startup that is developing software to empower consumers, helping them connect their healthcare to the rest of their everyday lives through information and guidance that makes it all easier.
My startup is less than a year old, and we’re learning all the time – what do people care about most with regard to their health? How can we design their experience better and help them change deeply ingrained behaviors that impact their health? The company headquarters are in California, but at least half of the staff is remote, so we use Google hangouts and Slack to collaborate throughout the day. While we don’t have a traditional “water cooler” to gather around, we achieve the same informal kind of banter through online discussions of pets and other pressing topics.
After work, I head home to my husband and our girls. I’d like to tell you that we have a wholesome, nutritious dinner every night, sitting around the dining room table. The truth is it’s often more like Grand Central Station in New York, with people crisscrossing each other and eating on-the-go, juggling soccer practice, piano lessons, Girl Scouts, homework, and two playful but needy Siamese cats.
I like collaborating with smart, passionate people who work hard yet don’t take themselves too seriously. At my company, we work very hard but take time to enjoy each other and the process along the way.
As part of my job, I often meet with people from outside my company: co-conspirators in changing health and healthcare toward a more person-centric view. Especially since I spent several years at the Office of the National Coordinator for Health IT (ONC), where I led consumer eHealth efforts for the federal government, I’ve done a lot of convening meetings and getting to know people. I’m a big believer in the power of partnerships that cross the barriers separating tech companies, government, provider organizations, patient advocates, health insurers and other groups in order to make change happen at scale.
I’m always most excited to meet individual consumers who are using social media and other technologies to manage and improve their health in novel or meaningful ways.
I’ve spent nearly 20 years at the intersection of health and technology, with a passionate commitment to consumer empowerment – supporting people to live their healthiest, best lives. It’s my North Star. I’ve pursued it in the federal government, the foundation world and the private sector, now in a startup. I love working within a community of people and organizations building toward a shared vision in which people are genuinely at the center of their own health and healthcare, supported by human caregivers and digital tools.
I’m motivated by consumer stories from the front lines in which people and their families are improving their own health, supported by connections to each other and technology. I know how hard it can be to go up against cultural expectations, which have traditionally assumed patients and caregivers are passive recipients of care.
When my youngest daughter was born with a small hole in her heart, my husband and I were told by a cardiologist that she must have open-heart surgery to close it. Despite the recommendation, it didn’t seem right to me as a parent, and I was terrified of putting my baby through the risks of major surgery if it wasn’t necessary. My husband and I did a lot of research online, reached out to other parents, and sought another opinion at a different medical institution. Eight years later, our daughter is happy and healthy… without the surgery. It was incredibly difficult to go against the grain to do what we thought was right for our family.
Having a voice as a patient or caregiver shouldn’t be so hard! Fortunately, the culture is changing toward patients being real partners in their own health and healthcare journeys.
The Blue Button Initiative is a program started by the federal government that helps patients and their families get direct access to their health data online. Back when I was working on the Blue Button Initiative, I remember a woman who shared how just-in-time access to medical records had saved her elderly father’s life.
Her father was admitted to the ER after an accident. Since she had his records at her fingertips, she could alert the staff about his medical history and the medications he was taking and warn them not to put him on a blood thinner. Just five hours after discharge, her father fell and suffered lacerations in his scalp and hand. She said if he had been on the blood thinner, the bleeding would have been life-threatening. “That type of data in a patient’s hand is so empowering,” she said at the time.
I was inspired then by her, and since then by hundreds of other powerful patient stories – some cautionary tales, others a glimpse of what is possible when we let patients leverage technology for better health.
My community is comprised of people who envision a world in which healthcare revolves primarily around the individual person and his or her needs, not just the needs of healthcare providers, payers or anyone else.
One person alone can’t do much – but together we are stronger, more creative and resilient. In my career, I have consistently bridged the gaps that separate tech innovators, patient advocates, healthcare providers, policymakers, funders and other actors. Health and healthcare are complex, and we absolutely have to collaborate to find ways to improve them. Plus, it’s more fun that way!
Fear of change is a shape shifter, and it’s not always easy to see it for what it is. It can masquerade as avoidance, delay or even anger. I’m not immune to it myself, but I’ve often encountered fear of change in others who are worried about what empowerment of consumers in health and healthcare might mean for them. The challenge advocating for change is figuring out win-win solutions that maximize mutual benefit in the big picture.
I believe people have the right and agency to live their healthiest, best lives, supported by technology and the people who care for them. And I believe the time is now to achieve that vision.
300+ education sessions. 1,300+ vendors. 45,000+ health information and technology superheroes.
Still time to save! Advanced Registration Discount ends January 14.