Talking with Jamie Heywood about PatientsLikeMe

Jamie Heywood joined me for this week’s Innovators show. His quest to cure ALS (Amyotrophic Lateral Sclerosis, aka Lou Gehrig’s Disease) is featured in a book and a movie. In this conversation, we explore Jamie’s current project: PatientsLikeMe. It’s a website where people pool data about their medical conditions, their drug regimes and related therapies, and their outcomes.

Of course people have been sharing medical information online since it became possible to do so. But PatientsLikeMe differs from other online health communities in several ways. The profile of a user is someone who is grappling with a serious, life-changing illness where:

• You are very debilitated, perhaps even unable to go to work.

• You can tell if your treatment is helping. (If you have Parkinson’s disease or depression, for example, you can judge what works or doesn’t. If you have breast cancer, you can’t.)

• You are in a situation where both diagnosis and treament are ambiguous.

The data that you report brings you into direct contact with other patients who share similar conditions and treatments. In this sense, PatientsLikeMe is a uniquely data-driven social network:

It is the richest open quantified human-to-human network that exists. There are a couple of hundred measured channels on which you can evaluate yourself against everyone else that you might be interested in connecting to. And you can go across any of those channels to anyone else in the world.

The data you report also brings you into direct contact with drug companies:

It connects you with the people who are developing the drugs to treat your disease. This cuts out an immense amount of inefficiency and middlemen, and can potentially make the system much better. It’s a way of rationalizing and accelerating discovery.

For that reason, Jamie sees no need to apologize for PatientsLikeMe’s business model, which is to sell the data it collects to drug companies. This arrangement may even, arguably, be a form of citizen science:

Do I think that we’ll be using crowdsourcing to interpret the RNA signature in blood? No. But in the real world, when you ask what it means to have ALS, each patient in the system is a representative of their own specific phenotype of this illness. Which is a way of putting it into the process of discovery. Because if you’re not in there — if you’re different, and everyone is unique in some way — the specific components of your own health and its impacts on your life will not be addressed in the process of treatment.

What about privacy? Jamie admits, honestly, that there can be no guarantees, and does not think people who expect guarantees should use PatientsLikeMe. It isn’t for everyone. But there are a number of folks who, after evaluating the risk of participating (pseudonymously) in the service, conclude that the benefit outweighs that risk. They are part of a collective experiment that I will be watching with the greatest interest.