“Story telling is the oldest form of teaching,” Matt Cavallo declared when we met on May 23. I couldn’t agree more. Great story telling has always intrigued me. Maybe that’s why I’m in PR. I have always believed that behind every organization is a zealous individual with an epic story waiting to be shared. It’s usually the CEO or founder, though not always.
Matt is a passionate patient advocate who dedicates his life to the fight against multiple sclerosis. He has been named among the top 10 Social HealthMakers by WCG and his blog was selected as one of Healthline’s top multiple sclerosis picks in 2015. His story of being diagnosed and overcoming the physical and emotional challenges associated with having a chronic disease can be read in his memoir, The Dog Story: A Journey into a New Life with Multiple Sclerosis.
What started as a simple half-hour meet-and-greet with Amendola Communications agency staff turned into a 90-minute conversation. Who has that kind of time, you ask? Well, Matt knew how to keep our attention: he had us laughing one moment and fighting back tears the next. It’s a skill few people have but many aspire to. This ability to connect comes in really handy during media interviews at large trade shows (such as HIMSS) where our PR clients (health IT vendors) get to pitch their product or solution to editors who decide on the spot whether they care enough to write about them…or not.
GetWellNetwork® founder and CEO Michael O’Neil was diagnosed with non-Hodgkin’s lymphoma at the age of 28. While the medical outcome was excellent, the patient experience was challenging. After four cycles of chemotherapy, he started GetWellNetwork to help hospitals improve performance and outcomes through patient engagement. Michael and his team work tirelessly to ensure the voice of the patient is heard. Today, more than 4.6 million patients use GetWellNetwork technology to engage in their healthcare. Take a minute to watch Michael tell his story in this short video.
Growing up in a family of doctors, ClearDATA CEO Darin Brannan got a firsthand look at the challenges healthcare practitioners face in treating patients using paper and outdated technology. It made him painfully aware of the number of people who die each day as a result of medical errors long before it became national news.
Despite the availability of electronic health records and other technologies that were supposed to solve the problem, reports show that more than 1,000 people still die each day due to medical errors. At the center of this seeming disconnect is a lack of cohesiveness among advanced information technologies. Darin believes that, “Healthcare is less of a science problem, it’s more of an information problem.”
In 2011, he co-founded ClearDATA to apply his cloud computing expertise to healthcare in order to remove the technical obstacles inhibiting patient safety and costing lives. Today, ClearDATA is recognized by organizations such as CB Insights as a leading healthcare information security services company, with $54 million in funding and a customer portfolio that includes some of the largest healthcare providers in the nation.
Dave Bennett, EVP, Orion Health, is passionate about precision medicine. He often tells the story about his son, Carter, who has cystic fibrosis (CF). Here is how he tells it.
About a decade ago, my oldest son, Carter, was diagnosed with cystic fibrosis.
Like most kids with CF, Carter had a host of physical problems, like lung infections due to mucous build-up and thrive issues due to pancreas blockage. In eighth grade his lungs needed a thorough cleaning, so he was hospitalized and homebound for three consecutive weeks with a PICC line.
Five years ago, Vertex Pharmaceuticals released a drug designed to address Carter’s specific genetic variation of CF, one that only four percent of patients have.
But when I told Carter’s doctor about it, he said it wouldn’t help Carter because he didn’t have that genetic variation.
Once I pressed the doctor to review 60 pages of Carter’s data, however, the doctor soon reversed his position.
“This is a game changer,” he said.
Now let’s be clear: Carter’s doctor is a great doctor. But he didn’t have the tools to help him analyze that 60 pages of data and connect my son to a promising new drug therapy that went on to stabilize his lung function, end his annual sinus surgeries, eliminate his regular bronchial scopes, made his ED visits a thing of the past, and allowed him to flourish into a six-foot-two-inch, 225-pound captain of his high-school football team. Today, Carter is a thriving college student, our payers don’t have to pay for all the procedures mentioned above anymore, and his mom and I don’t worry about him one bit.
That is the promise of precision medicine exemplified. But in the future, rather than rely on a highly interested advocate—like a parent who’s passionate about precision medicine—to provide that cognitive support, payers and providers will be able to rely on technology that synthesizes and analyzes the data (e.g., those 60 pages Carter’s doctor couldn’t effortlessly process) and utilize it in the right context at the right time.
“This is my mission,” Dave tells journalists. “I want to help doctors and patients in making decisions about what will help them. To do this work, you really need focus at the mission level, because it’s going to change healthcare for the better and make a difference in people’s lives.”