Co-Founder and Chairman, PatientsLikeMe.com
Helping his brother deal with ALS sparked Heywood’s desire to find a way to support others in a similar situation.
What is PatientsLikeMe?
JH: We’re a free website for anyone living with a chronic condition. People use our site to track and compare treatments, symptoms, and experiences, connect with others like them for information and peer-to-peer support, and give health data for research. We have a particularly strong community of people living with Post Traumatic Stress Disorder.
What was the inspiration behind it?
JH: My brother Stephen’s diagnosis, and the attempt to treat his ALS inspired PatientsLikeMe. Despite the extraordinary measures we took to heal him, ALS took Stephen’s life almost ten years ago. We learned so much from other patients about how to live well and to advance our understanding of disease that we realized connecting all patients would be a resource that could transform patients’ lives.
That was a different way of thinking about how to fight,
JH: Yes. Medicine has become so technical. Somehow it’s lost the idea that the heart of medicine is in understanding the patient experience. When you gather people with the same problem together, learning happens automatically. We’re building the foundation that makes that work.
How members do you have?
JH: We have about 500,000 members living with 2,500 conditions.
How many are veterans living with PTSD or TBI?
JH: There are 10,000 veterans on the site. The thing that makes them so special is they engage more than any other group to help others. Even if they’re suffering severe symptoms, veterans know they can help others and that process is healing for them and for others. I think it’s beautiful. It’s the connection of experience, no matter how disparate, that make the human condition meaningful.
What are the veterans’ specific issues?
JH: While there are some variations in the symptoms of the disease, including their ability to manage anger, veterans are focused on maintaining relationships and looking at why problems like anger make it harder. About 65 percent of veterans seek treatment due to problems with their partner or spouse. And 1 in 5 wants their anger under control more than any other symptom because that’s vital to maintaining relationships. The shared learning between people who are figuring out how to do this better and people who are having trouble is the best way to accelerate finding answers for all.
How do you make sure the data they report are accurate?
JH: Many people question whether patients can report accurately on their own experience. I think that depends on the kind of data you seek. Obviously, data about labs or formal diagnoses would be better informed by connecting this data directly to the medical system. But what if the problem you’re experiencing is how you feel? How is it that a doctor reporting that you’re having problems relating to your spouse makes that more accurate than your own self-reporting using the same question in the same format using a common technology? Since our focus is to find data on the experience of living with disease, there is no more accurate source than the patients themselves.
Was there a post, or a significant moment on the site that sticks in your mind?
JH: A few months ago a 24-year-old who had returned from two deployments in Afghanistan with severe PTSD and a mild TBI was depressed and on the verge of suicide. Like most people returning from service he didn’t want to talk about his experience. But he found our site and posted what he was feeling and thinking. Other veterans responded with encouragement and shared their own stories. He’s doing better, and says that connecting with others made him realize that “half the battle is knowing you’re not alone in this.” That’s the hardest thing for people who are in a desperate place to understand.
What’s your mission today?
JH: Our mission is to make the patient voice matter, to make the standard for truth about whether healthcare is delivering value or drugs are working, or patients are improving, determined by patients themselves.
Where do you hope to make the biggest impact for veterans?
JH: We want to make sure those veterans who need them can identify the right services that will deliver value. We want to build an ecosystem where those who have served our country can learn how to manage the unique challenges and opportunities that will help them thrive in the civilian world.