Individualizing Medicine through the Online Research Platform: PatientsLikeMe


Post Written By UMR Student Kate Scheffler

As the health care field continues to grow, the opportunities to improve patient care are endless. Jamie Heywood, Co-founder of the innovating company PatientsLikeMe, gave an eye-opening presentation at the 2013 Transform Conference held at the Mayo Civic Center this past September. As Founder of the ALS Therapy Department Institute, Heywood is a widely known advocator for the advancement of treatments for amyotrophic lateral sclerosis (ALS), commonly known as “Lou Gehrig’s disease.” A relatively rare disease, ALS affects nerve cells in the brain and spinal cord that causes progressive degeneration of the motor neurons, eventually leading to death. Heywood has had first-hand experience with this debilitating disease, as his brother was diagnosed in 1998.

After investing all of his time into learning everything about ALS, Heywood discovered that because ALS didn’t affect a large number of people, research into treatments were not deemed “profitable,” leading to an unfortunately low allocation of resources. In order to provide the best possible care to patients, Heywood believes that the current healthcare system must change drastically. In 2006, with the goal of improving both treatments and the way that ALS patients receive medical care, Heywood developed an interactive website, which he named PatientsLikeMe. This free patient network improves the ability of patients to share knowledge of their disease with similar patients.

This interactive program has since been expanded to patients with any condition, including rare diseases. Through this interactive tool, patients share information on outcomes, treatments and symptoms that can be used to make decisions for managing these debilitating illnesses. Patients are able to track and share experiences regarding their disease or condition by asking questions such as, “given my status, what is the best outcome that I can hope to achieve, and how do I get there?” In addition to offering a place for patient to connect with others, the site also serves as a real-time research platform that has advanced medicine.

Through this program, patients are able to upload real-world data on their illnesses, treatment, and symptoms. The information is then presented as organized charts and graphs that allow patients to better understand their illness and to identify patterns. PatientsLikeMe generates clinical data at no cost. This information has not only been useful to patients, but also to researchers, pharmaceutical companies and many more.

The information provided in this program offers a way for patients to regain control over their lives. This program allows individuals to understand their condition and contributes to improving their overall well-being. By allowing patients to be involved and in charge of their own health, the way that we think about the delivery of healthcare shifts dramatically. What began as an effort to search for a cure for ALS has since grown into an innovating website that has helped countless patients take control of their illnesses.


Registration is now open for Transform 2014! Find out all the details here.

Kate Scheffler

Kate Scheffler is a contributing writer from the University of Minnesota Rochester.













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