Humanizing health care.
It may sound like a strange call to action, but despite health care being about helping people get/be/stay healthy, the industry sometimes loses sight of who we should be listening to—the patients (and patient advocates). At the 2018 What’s the Fix? (#WTFix) Conference, presented in partnership with the Design Institute for Health at Dell Medical School, stories from patients and advocates took center stage.
#WTFix was created to put people at the center of health care by sharing inspiring stories of positive change. And, as a way to support those saying no to the status quo. The first half of this year’s event was focused on individuals making change. There stories are powerful. Grab your tissues!
The conference sessions kicked off with Dr. Jeff Rediger, a theologian and Harvard physician, presenting, “Using Amazing Stories of Amazing People to Drive Change in Health Care”. Jeff is passionate about the mind-body connection. He is focused on the whole person. As the perfect start to an agenda focused on the power of the person, he shared the stories of inspiring individuals who have recovered from illnesses once considered incurable.
Dr. Rediger’s approach to health care goes beyond traditional medicine. While clinical care is important, he believes spiritual wellness and fulfillment is core to people ability to heal and thrive. Health care has been resistant to democratization, but he feels that is the future. Health care will not be a science of disease and medication in the future. It will be about health. We’re moving from the current model based on 18th century medicine to a new, sci-fi future where technology helps people take control of their health.
Sequence Me: Using Precision Medicine and Music to Fight Cancer
If the fight against cancer has a theme song, it is sung by Bryce Olson. A father, technologist and cancer survivor, Bryce founded FACTS (Fighting Advanced Cancer Through Songs) a movement using the power of music to connect cancer patients and caregivers with a powerful message about fighting cancer differently. Wearing ‘sequence me’ t-shirt, he shared his passion for the exciting area of genomics and precision medicine and how this saves lives.
Bryce’s story is even more powerful because he’s one of those lives. He chased down researchers to help him sequence his cancer and find the right treatments. He knows innovation is key to helping patients. “It’s a shame that only 4% of cancer patients participate in clinical trials,” he says. Bryce knows beating cancer is a full-time job and he’s working give back with hope, through technology and with his music project. He wrote and co-produced an album in support of a movement that brought together a variety of musicians and singers who are also cancer survivors.
Trained as an economist, not a clinician, Mette Dyhrberg’s path in life took a dramatic turn when she became ill. She talked about the journey as someone with an auto-immune disease. What’s it like? She says, “Put on your boxing gloves. Being chronically ill means you always need to be ready to fight.”
And fight she did. Using the skills she had from the business world, Mette took optimization processes and applied them to her body. She decided to hack her way into a cause by monitoring her body. Mette took her learnings and started Mymee.com, a disease agnostic platform, to help other people suffering with diseases lead better lives.
“I’m thankful that I could take off the gloves, only taking them out occasionally,” she says. People need to listen to body signals and pre-empt problems. Mette wants women, in particular, to ‘get in the driver’s seat and put on the (hero) cape. Her call to action, “Make sure you’re the one living your life (not your disease).”
When Doug Lindsay was in college, he got sick. Not a cold or flu sick, but seriously ill. For the next 11 years, he could walk only 50 feet and stand for less than a minute. Doctors couldn’t provide answers to his condition, no treatments and no hope.
Doug wasn’t about to let that be his life. He remembered the words of someone he worked for as a teenager, “If you want to make something different, you need to do something different.” So, he started with scientific research and this led him to determine his was dealing with autonomic nervous system disfunction.
Despite pushback from clinicians, Doug persisted. He ultimately found a clinical collaborator and ended up adapting long-forgotten models of adrenal gland surgery on animals into a modern human surgery so surgeons could treat his rare autonomic-adrenal condition. It took time, but his tenacity paid off.
Unfortunately, Doug wasn’t the only one in his family who was sick. He used his fighting spirit to advocate for his mother. Sharing his lessons learned, Doug’s most important message is ‘don’t quit’.
Never underestimate the power of one passionate person to create positive change. Read more about speakers in our blog, or better yet, watch them yourself!