Tuesday, March 30, 2010

Patients Like Me

We began a journey to learn a new way of thinking about life.
~ Jamie Heywood

You may not recognize the name Jamie Heywood, although you may have heard about an open network that he helped create to enable patients to follow the course of their own particular disease, to chart disease symptoms, to plot effects of drugs, to turn personal stories into computible data to find treatments and cures. Perhaps you even enter your own disease information into that network.

James Allen (Jamie) Heywood is an MIT-trained mechanical engineer. He's been called a healthcare revolutionary. He passionately advocates for patients' right of access to in-depth information on symptoms, treatments, and outcomes, so that they can manage more effectively their life-changing illnesses.

When in 1998 his brother Stephen was diagnosed with non-genetic ALS (Lou Gehrig's disease), a progressive disease that eventually takes life after taking ability to move, speak, and breathe, Jamie Heywood founded ALS Therapy Development Institute (ALS TDI) and then hired scientists to come up with treatments outside those established by the for-profits and academic institutions that rule the medical research realm. The world's first nonprofit biotechnology company, ALS TDI was the first also to publish research on the safety of using stem cells in ALS patients. Its work could not save Stephen Heywood, who died in 2006, but Jamie Heywood refused to stop looking for a cure and came to see his brother's experience of ALS as a gift that began for him "a journey to learn a new way of thinking about life."

There is an amazing journey we are going on
 to become human, to become part of community again, 
to share of ourselves, to be vulnerable.
It's very exciting.

Together with his youngest brother Ben Heywood and his friend Jeff Cole, Heywood created in 2005 the Website PatientsLikeMe.com, a "fully transparent" network whose members enter a complete copy of their personal healthcare information, track every aspect of their experience of their disease, and share and compare their health profile to learn more about and understand their diagnoses, treatments, disease progression, and disease management.

PatientsLikeMe.com has at least 45,000 registrants who belong to one of more than a dozen "disease communities", including "prevalent" diseases such as epilepsy and MS and "rare" diseases such as multiple system atrophy. It is not, however, only a repository for personal healthcare information. It also collects users' health data to test the effects of particular treatments, exclusive of clinical research trials; to show, in some cases even seek to forecast, what works and what doesn't. It examines patient attitudes, beliefs, behaviors, and outcomes. It devises tools and applications that allow users to visualize symptoms and side-effects; to explain drug interactions, and inter-relationships among drug types, dosages, and durations of use; and to consider whether one or another course of treatment is likely to be beneficial.

In the video below, from TED Talks, Heywood describes and shows what PatientsLikeMe.com is and does.

Jamie Heywood is the subject of His Brother's Keeper: One Family's Journey to the Edge of Medicine, a biography by the Pulitzer Prize winner Jonathan Weiner, as well as a New Yorker profile (among others). In addition, he was featured in So Much So Fast, a documentary on the Heywood brothers' personal story and the founding of ALS TDI.

3 comments:

M.L. Gallagher said...

what an amazing story!

A. Jay Adler said...

Just one illustration of the fascinating variety of people, work, and experiences you share with this blog. Thanks.

S. Etole said...

this is quite remarkable ...