It’s a sad yet heartwarming story. In 1998, Stephen Heywood, a strong 28-year-old carpenter who was building his dream house in California, got the worst possible news. He was diagnosed with amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease. His brothers, Jamie and Ben, stood by his side as he doggedly fought his disease and pursued a cure. Stephen eventually succumbed to ALS but his courageous journey will always be remembered through an autobiographical movie, So Much So Fast, and a book, His Brother’s Keeper by Pulitzer Prize–winning author, Jonathan Weiner.
Helping Stephen deal with the day-to-day challenges of his disease and experiencing firsthand the decisions that have to be made and the lack of information that’s often available profoundly changed the direction of Jamie and Ben Heywood’s lives. In 1999, Jamie Haywood launched an organization called the ALS Therapy Development Foundation, to help Stephen and others fight ALS. Today, it remains well funded and staffed and supports a number of research efforts. In 2005, Jamie and his brother Ben took an additional step and launched PatientsLikeMe, a Web-based company that allows people with life-changing diseases to converse with one another, share their experiences, and learn techniques from each other that help them better cope with their diseases.
Since its launch, PatientsLikeMe has achieved remarkable success. Over 70,000 members were sharing life-changing medical information with each other as of late 2010. In 2008, the organization was named one of the “15 Companies That Will Change the World” by Business 2.0 and CNN Money. In 2010, it was named one of the “10 Business Models That Rocked 2010” by Board of Innovation, an international management consulting firm.
At the heart of PatientsLikeMe’s success is a truly unique value proposition—a platform that encourages patients to interact in ways that are very meaningful for them. PatientsLikeMe is also a bold company in that one of its goals is to change the way that the medical industry thinks about patients and patient care. To facilitate that goal, PatientsLikeMe is working with rather than against the medical industry. In fact, its primary revenue driver is to sell aggregated data that it collects from its online patient communities to medical companies to enable them to factor the “voice of the patient” into all aspects of their product decisions.

Value Proposition
PatientsLikeMe’s value proposition is the opposite of what you might expect in that conventional thinking is that a person’s medical information is private and should be kept confined to a tight circle of family and health care providers. PatientsLikeMe advocates that people openly share their experiences to help others. It’s inspirational in that most of its members have illnesses that consume a great deal of their own time and energy, yet are willing to expend time and effort to share information to improve the lives of others.
Here’s how it works. Say someone you care about has been diagnosed with Parkinson’s disease, a neurological disorder that affects 2 percent of people over the age of 65. On PatientsLikeMe, that person will be able to interact with people who have been living with Parkinson’s disease for 3 years, 5 years, 10 years, or more. Your friend or loved one will be able to ask, “What’s it like after three years? What will I be able to do and not do? What’s the scariest part of the disease?” You’re friend or loved one will also be able to ask the number one question that people with diseases have. That question is “Given my status, what’s the best outcome I can hope for and how can I get there?” This question will be answered by someone who has the disease and who truly understands all the emotions and fears that they have rather than by a medical professional.
PatientsLikeMe’s service is unique in that it not only facilitates these types of interactions, but also collects detailed information from its members about the symptoms they’re experiencing, and medications they’re on, and how their diseases are affecting their lives. It then displays this data in aggregate form for its members and others to see. It also drills deeper. It allows patients to share the experiences they’re having with a particular drug, for example. How long they’ve been on the drug, what the side effects have been, whether they feel the drug has been effective, and so forth. This is information that people who have just been prescribed a drug are anxious to see.
Its members can also interact directly with each other regarding their experiences. For example, Carbidopa-
Levodopa is a drug commonly prescribed to Parkinson’s disease patients. Someone named “Mary O.” may have reported on her profile that “When I first started taking Carbidopa-Levodopa it made me sleepy, but over time my body adjusted and I no longer have that side effect.” If you’ve just been prescribed Carbidopa-Levodopa, you can send a message to Mary O. and ask her, “How sleepy did you get? Was it so bad you couldn’t go to work? How long did it take before your body adjusted? Did you try caffeine? Did it help?” Mary O. would then respond and answer the questions. In addition, as a result of this exchange, you and Mary O. may start to regularly correspond, and Mary O. may become for you an important source of information and support.
What’s remarkable about PatientsLikeMe’s value proposition is that the information its members exchange and the manner in which it aggregates and displays data isn’t available anywhere else. The manner in which its members are willing to be transparent about very personal health-related issues is also compelling.

Revenue Drivers
Although its services are free to users, PatientsLikeMe is a for-profit entrepreneurial venture with two primary ways of making money. First, it sells aggregated medical data to members of the medical community, like drug companies, medical-device companies, and health care providers. For example, the aggregate data of how Parkinson’s disease patients are reacting to a particular medication would be of interest to the company that makes that medication. The sharing of this information then circles back and helps patients. For example, if the maker of the Parkinson’s drug finds that a large percentage of people who take the drug experience fatigue, the drug can potentially be tweaked to remedy that issue. For patients, not experiencing fatigue as a side effect of the drug may not only translate into feeling better, but may mean less days missed from work or even being able to maintain a job rather than having to quit.
Because of these types of outcomes, most patients are eager to have their personal data included in larger databases and passed along to companies in the medical industry. Finally, their experiences and their voices become part of the data that medical companies study when making decisions about patients and their care.
The second way PatientsLikeMe makes money is by helping pharmaceutical companies enlist participants in drug trials and studies. For example, 5 percent of all the people in the United States that have ALS (Lou Gehrig’s disease) are PatientsLikeMe members. That’s a large set of people who can be asked whether they’re willing to participate in an experiment or trial. Most people with a disease like Lou Gehrig’s are keenly committed to doing everything possible to find a cure for their disease. As such, they tend to be quite eager to participate in experiments and trials.

Discussion Questions
1. Describe the way in which PatientsLikeMe practices “execution intelligence.” How important a part of PatientsLikeMe’s success do you think these practices represent?
2. To what degree does PatientsLikeMe’s founding story debunk one or more of the common myths of entrepreneurship?
3. Compare and contrast PatientsLikeMe with Inspire (www.inspire.com), a company with a similar mission.
4. What do you think about the concerns regarding PatientsLikeMe’s rapid growth and the worries expressed about the potential downsides of participating in its forums? How important and potentially damaging are these concerns?

Application Questions
1. Why do you think people are willing to be so transparent in PatientsLikeMe communities?
2. What is it about PatientsLikeMe, and the people behind it, that make it special? Would it be easy or difficult for another firm to imitate what PatientsLikeMe is doing? To what degree do you believe PatientsLikeMe will be successful in persuading the medical community to go beyond creating products and services that treat a patient’s core disease, and create products and services that touch all aspects of how the disease is affecting their lives?