PatientsLikeMe Needs Your Medical Data

Donate Your Medical Information and Make the World a Better Place


I hesitate to call James (Jamie) Heywood a superhero. After all, we know that the only superheros out there are Michael Jordan (who can fly) and Dos Equis' "The Most Interesting Man in the World" ("stay thirsty my friends"). However, Heywood's whole backstory screams archetypal superhero. When his brother Stephen--who by all accounts was a really cool dude--was diagnosed with the hellacious amyotrophic lateral sclerosis in 1998, Heywood and his family were hit with unspeakable tragedy. Instead of bemoaning his bad luck and sulking in a corner, in 1999, Heywood rallied with friends and family to set up the ALS Therapy Development Institute, a non-profit biotech company with the unabashed goal of beating ALS.

In 2004, James Heywood co-founded PatientsLikeMe, a company which solicits and shares medical information from people with chronic disease in order to not only help other patients ​but also improve clinical understanding of disease and help direct future clinical research. At the core of these efforts lies Heywood's superheroic understanding of math and its applications and a recondite compassion for all those who suffer from chronic disease.

PatientsLikeMe Is Surmounting Limitations

In 2008, Heywood and his colleagues first made a splash with the publication of an unnerving discovery: Most ALS-research animal studies which lead to human trials were irreproducible and insignificant. (Significance is statistical jargon for findings that are attributed to something other than chance. Essentially, Heywood showed that more than half the basic science research on ALS was flawed.)

Heywood's findings received a lot of press--including coverage in Nature--but little else. As often happens, the entrenched institutions of medicine did little to change. In the wake of this discovery, Heywood has established himself as a maverick on a mission to quantify the personal narrative of living with chronic disease and using this data for clinical and research good.

"If you look at amyotrophic lateral sclerosis, multiple sclerosis, depression or idiopathic pulmonary fibrosis," says Heywood. "What it’s like to live with the disease is probably the best measure of the pathology. What we collect are the variables that are important to the patients who have to manage their own care, the [variables that help the clinician plan] what to do next in care, and the researcher evaluate whether or not treatment is effective against the disease. And we do all this using patient vocabulary and terms that they clearly understand."

Case in point: I wrote an article about idiopathic pulmonary fibrosis. Jamie read it and liked it--'cuz y'all know that's how I do--but pointed out that fatigue is probably a lot more nuanced than my cursory and, ahem, evidence-based assessment.

Heywood suggests that fatigue in people with idiopathic pulmonary fibrosis is linked to sleep apnea and oxygen insufficiency and differs from fatigue experienced by people with other types of chronic disease. This understanding is rooted in information PatientsLikeMe, Heywood's company, gathered from thousands of people actually living with the disease. Such information can influence how idiopathic pulmonary fibrosis is treated, how people with this disease care for themselves, how physicians gauge patient well being and prognosis, and how researchers choose variables and interventions on which to focus future clinical trials.

Heywood and his colleagues have so far gathered 25 million data points (think pain, insomnia, mood, medication tolerance, medication adherence and so forth) from 300,000 people on more than 2300 diseases (think cancer, coronary heart disease, hepatitis C, and so forth). They then crunch this data derived from diverse samples and then use predictive math models to continuously improve our understanding of disease. In other words, James uses "what outcomes are meaningful to each of us to inform better trial endpoints and improve the way we measure disease."

Heywood states, "If you get a group of people together, and measure what matters to them, you can use that information to more effectively evaluate whether things work in the real world and guide better choices in the clinic .... We should imagine and be working toward a world where every decision you make about your health or health care is informed by the decisions and outcomes of everyone who comes before."

PatientsLikeMe is proving through observational study that the way we look at medicine is limited, and many of us are unaware of such limitation.

"The public assumes already at an 80 percent level," says Heywood, "that their medical records are used to understand disease, improve care and develop drugs." And, as expatiated by Heywood, that's just not the case.

Ultimately, Heywood recognizes that disease is influenced by phenotype, environment, biome and so forth. He acknowledges that physicians are wonderful "heuristic machines," who use experience and inference to treat patients. However, such problem solving can be quantified and standardized to make life better for both the physician and the patient and dramatically improve care for all of us.

“Medicine is too much story telling," says Heywood. "It needs math .... it needs to really have some rigorous math."

According to the PatientsLikeMe website, to date, the organization has "helped refute and preempt traditional randomized clinical trials, modeled Parkinson's Disease, validated epilepsy quality measures, shed new light on medication adherence in patients with multiple sclerosis (MS) and organ transplants, and added and validated patient reported outcomes in psoriasis, autism and MS research."

Donating Medical Your Info

PatientsLikeMe invites you to donate your medical information to their site. According to a November 17, 2014, press release such "data are de-identified and shared with partners to help bring the patient voice to medical research, develop better clinical trials, and create new products and services that are more in tune with what patients experience and need." Of note, if you're reading this article after the "24 Days of Giving" has ended, you can still donate your medical information.

Heywood sums up your donation with the following: "You have to know that there will be someone just like you in the world facing a problem that you’ve solved or you’ve learned something about. Go to PatientsLikeMe [and] share your experience, and you will help that person."

On a more personal note, I usually veer away from corporate-based stories. However, despite a for-profit--or as they call it "not-just-for-profit"-- business model, Jamie and his friends set up as a resource for us all. They promise to put our data to benevolent use, and I totally believe them. So let's all pitch in and help a bona fide "superhero" (let's call him "Supermath," get it? Ha ha, I crack me up!) on a super mission to save us all!

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Article Sources

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  • "Design, power, and interpretation of studies in the standard murine model of ALS" by S Scott and colleagues from Amyotrophic Lateral Sclerosis published in 2008.  Accessed from PubMed on 12/13/2014.
  • Information taken from accessed on 12/13/2014
  • Interview with James Heywood on 12/10/2014
  • Keynote Presentation at 2014 50th Annual Meeting:
  • Selected Sources