Cambridge, MA — Some of the boldest innovators in health found inspiration in their own horrible experiences inside the system. What’s more, the echos of their own challenges keep driving them to build more and more. Here are two stories we love – both start with men fighting for the lives of their brothers.
Jamie’s younger brother, Stephen, called to tell him that “the news does not look good.” Stephen had been diagnosed with ALS, a debilitating disease with an average life expectency of three years. ALS paralyzes the body. In Stephen’s case, it’s how he went from being a healthy, robust 29-year-old man to someone who could not breath, could not move, could not speak.
The entire family fought for Stephen – not just to extend his life, but to improve the quality of every day he had. They were frustrated by how little experience doctors had with ALS – each had treated maybe one or two people with the disease. Those doctors didn’t know what worked beyond prescribing endless drugs for the symptoms.
In 2005, Jamie and his youngest brother Ben, along with close friend Jeff Cole, built PatientsLikeMe.com to give patients control and access to their healthcare information and compare it to others like them. They hoped that if they could bring enough people together – each entering their own specific medical experience – they could not only help these people with relatively rare life-changing conditions support one another, but also help them act as their own advocates in their treatment and their lives.
PLM is part databank, part community. It has the most comprehensive content on certain mood and neurological disorders of any databank in history. And, it was all crowdsourced – entered by individual patients one visit at a time by answering the question: “What is my status?” For Stephan that would have meant walking, breathing, etc., but ultimately happiness and function. It’s not just about the pathology at PLM, it’s about the impact on everyday life.
PLM was named one of “15 companies that will change the world” by CNN Money, but it’s true value may be best described by Jamie himself:
“This is an amazing journey we’re on, to become human again, to be part of community again, to share of ourselves, to be vulnerable, and it’s very exciting.”
The Heywoods are continuing to push for better, more people-driven experiences in health. This year the Robert Wood Johnson Foundation awarded them a $1.9 million grant to create the world’s first open-participation research platform for the development of patient-centered health outcome measures. Linked with the PatientsLikeMe patient network, the new platform will help researchers develop health outcome measures that better reflect patients’ experiences with a disease, and assess health and quality of life in ways that matter to patients.
Using the platform, researchers will quickly attract PatientsLikeMe members to their studies, track the progress of newly developed measurements, and export data for analysis. Patients will be able to offer their rapid feedback to ensure that measures are relevant to their experience of disease.
Dr. Craig Keyes
In the early 1990s, Dr. Craig Keyes worked in New York City, treating underserved and uninsured people with HIV and AIDS. His older brother Bill was one of his patients. It was a conversation with Bill that changed his entire career – shifting his focus from doing what he could within the system to setting out to change the system.
“He told me once that he hated the (healthcare) system and I told him I hated it, too,” Dr. Keyes said. Bill responded: “But I thought this was your system?” He challenged his brother: “Instead of lobbing grenades from the sidelines, go to business school and take a seat at the table.”
That’s exactly what Dr. Keyes did.
Bill Keyes died from complications related to AIDS in 1993. Keyes finished his MBA at the Columbia University School of Business three years later. He now leads health initiatives at Alere. The company specializes in remote monitoring -developing smart products that extend diagnosis from the lab, doctor’s office, and hospital to people’s homes. It also builds educational health management solutions around these products, which make it easier than ever to personalize care.
Keyes has become a leader in digital health by focusing on results first. He said, “That is where healthcare is headed. It isn’t enough to generate imagination and hope. We’re not selling perfume. This is health. While creativity will be hugely valuable it will be so only to the extent it can translate into real change that will it be sufficiently valued.”
Posted by: Leigh Householder