Patients like me1

Synopsis
PatientsLikeMe is a patient network and real-time research platform. Through the network, patients
connect with others who have the same disease or condition and track and share their own
experiences with the goal to improve outcomes. In the process, they generate data about the real-
world nature of disease. With over 600,000 members, PatientsLikeMe is a source for real -world
disease information and its patient-generated data form the basis of more than 100 scientific
studies. PatientsLikeMe was inspired by the life experiences of Stephen Heywood, diagnosed in
1998 at the age of 29 with amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease. The
company was founded in 2004 by his brothers Jamie and Ben Heywood and long-time family friend
Jeff Cole.

The scope of the platform

PatientsLikeMe launched its first online community for ALS patients in 2006. From there, the
company began adding other communities for other life-changing conditions, including e.g.
multiple sclerosis (MS), Parkinson's disease, fibromyalgia, HIV, chronic fatigue syndrome,
epilepsy or organ transplantation. The company's approach was to listen to patients self-reports and
read the scientific literature and to identify outcome measures, symptoms, and treatments that were
important to patients and could be accurately reported. For example, the development of the MS
community involved the development of a new patient reported outcome measure, th e MS Rating
Scale (MSRS), to ensure patients could accurately determine how their condition was progressing
over time. In April 2011, the company expanded its scope and opened its doors to any patient with
any condition. Today the website covers more than 2,700 health conditions, with new members
joining daily from the US and other countries around the world. Of note are the more than 10,000
ALS members, who have helped make PatientsLikeMe’s flagship community the largest online
population of ALS patients in the world.

Products and Services

PatientsLikeMe allows members to input real-world data on their conditions, treatment history, side
effects, hospitalizations, symptoms, disease-specific functional scores, weight, mood, quality of life
and more on an ongoing basis. The result is a detailed longitudinal record – organized into charts
and graphs – that allows patients to gain insight and identify patterns (see Exhibits). The data-
sharing platform is designed to help patients answer the question: “Given my status, what i s the
best outcome I can hope to achieve, and how do I get there?” Answers come in the form of shared
longitudinal data from other patients with the same condition(s), thus allowing members to place
their experiences in context and see what treatments have helped other patients like them. Some
communities, such as ALS, feature visual aids such as percentile curves on the patient profile, so
that an individual user can see whether their rate of progression is fast, slow, or about average. A
seizure tracker for patients with epilepsy helps identify triggers such as missed medication doses,
sleep deprivation, or alcohol use, a "mood map" for patients with mood disorders helps to show
different factors underlying their condition such as emotional control, anxiety, or external stress .

To improve the service quality and to address the limitations of self-reported data, PatientslLikeMe
pursued a partnership with Biogen that combined patient-reported data with objective
measurements tracked through wearable technology in 2015. A pilot study aimed to understand
whether a wearable device could be used to monitor activity among MS patients and to assess
patients’ comfort levels with sharing de-identified aggregate data with a pharmaceutical company.

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This case was compiled from public sources (e.g. Wikipedia, the business press and th e company website).
Of the 248 patients provided with Fitbit One trackers, 82% activated the device and authorized
PatientsLikeMe to access their data; 203 of these patients produced an average of 18 days of data
over a 21-day period.

Currently, PatientsLikeMe is working on another potential service called DigitalMe. DigitalMe will
combine multiple sources of health data; pulling together experiential, environmental, biological
and medical information to create a digital version of every member. Based on the members’
specific condition, what can be seen across conditions, and what can be learned from the data – the
platform will choose from the most advanced scientific resources available today like machine
learning to examine each member’s RNA and DNA, proteins, antibodies, microbiome and
metabolites. Currently in a developing stage, the technology is not yet widely available, but
PatientsLikeMe wants to invest and partner with its members, to help make this more affordable
and available to everyone in the future. Joining the development team is free of charge.

The current business model

Describing itself “a not just for profit,” the site does not allow advertising on its site. It was free for
members, charities and non-profits but sells research services as well as aggregated, de-identified
data to its partners, including pharmaceutical companies and medical device makers. Typical
commercial services include helping to optimize the designs of clinical trial protocols, developing
new patient reported outcomes, or identifying the severity of symptoms in specific patient groups.
The company enforces transparency about who uses the data and partners have included most of the
largest pharmaceutical companies worldwide such as UCB, Novartis, Sanofi, Avanir
Pharmaceuticals and Acorda Therapeutics.

Privacy versus Openness as a core value

In contrast to many healthcare platforms which emphasized privacy, PatientsLikeMe had what it
called an “openness philosophy” towards patient data. As a senior manager pointed out:

It may sound counterintuitive, but it’s what drives our ground-breaking philosophy.
You see, we believe sharing your healthcare experiences and outcomes is good.
Why? Because when patients share real-world data, collaboration on a global scale
becomes possible. New treatments become possible. Most importantly, change
becomes possible.

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Exhibits – Screenshots from the company website

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