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Starting with Stephen

A quest to help one man illuminated the central question for all patients

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Starting with Stephen
The Heywood brothers—Stephen, Ben and James (left to right) are pioneers in patient advocacy. Photo by Richard Howard.

Call me selfish, but when it comes to health, I want it to be about me, not some trial, or group or someone else’s genes. It should be about me. I want my data put in context: my illness, my personal issues, my history, my life and health goals and even perhaps a personal projection of my likely fate—not an average, not a mean.

The holy (and essentially failed) quest of medicine is to find a computable model that provides the right information to a patient and doctor to help give individualized care. This failure is built on a false premise that health itself has a common model. Basic measurements, such as temperature or weight, all have different meanings and corollaries depending on you the individual, your disease and your environment. Sometimes these measurements should go up; sometimes they should go down; and the supposedly ideal ranges vary. Even if we solved the model for those measurements, are those the variables that are truly important to patients? In my selfish quest to optimize my health, I’m not that interested in my temperature. I want to know what will drive my ability to love and live, what will maximize my well-being and happiness. Today’s healthcare doesn’t measure these variables—or even know how to define them.

I never really thought about the lack of a disease model until 1998, when my younger brother Stephen was diagnosed at age 29 with amyotrophic lateral sclerosis (ALS). Over the next 10 years, our family moved the sun, moon and earth to find answers for Stephen, but we did so in an information vacuum. Along with my brother Ben and friend Jeff Cole, I decided that no one should have to do it alone. We founded an online patient community company called PatientsLikeMe. With Stephen’s ALS as a focus, we built a medical model that could solve his problems one at a time: What should he take to help treat his disease? Does it make any difference? How will he change over time? How should he manage his symptoms? What equipment does he need? How can he communicate? Can he still have sex? These questions are ones most other ALS patients had, too, and like Stephen, they began to share structured data of their experiences.

We moved on to building models for patients with similar life-changing diseases, including multiple sclerosis and Parkinson’s disease. Then, in 2008, we leapt to launch communities that could help patients address their depression, anxiety and pain. Throughout these efforts, we also developed better and better models of diseases that patients could use to measure their own health and quality of life.

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