Web: www.patientslikeme.com
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, CarbidopaLevodopa 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.
Challenges Ahead:
PatientsLikeMe is expanding its reach. While its site originally focused exclusively on life-threatening diseases, it now supports communities that focus on issues such as infertility (for both men and women), depression, and hearing loss. Rapid growth is a challenge for all firms, and PatientsLikeMe is in a rapid-growth phase. In fact, at the time this case was written, April 2011, PatientsLikeMe was not accepting new members, while it updated its Web site to add new features.
There are also several worries that surround a service like PatientsLikeMe that the company openly acknowledges, but believes the benefits outweigh the risks. One worry is that medical and life insurance companies have clauses that exclude preexisting conditions, and that members may disclose information on their PatientsLikeMe profiles that would jeopardize their insurance coverage. A similar worry is that some employers may not want to employ people with a high-cost or high-risk disease. Again, it’s possible that some people may reveal the existence of a disease on their PatientsLikeMe profiles that may jeopardize current or future employment opportunities. Another worry is the unknowns about changes to health care policies and the overall health care system in the United States that may result from major health care legislation that was passed in 2010. Might some of these changes affect how information about patients is distributed and to whom?
For now, PatientsLikeMe is aggressively moving forward. The company’s overarching goal, along with providing the value it currently provides, is to shift the thinking of companies in the medical industry by providing them access to data they never had before. By better knowing the journey that patients are on, the hope is that the medical community will increasingly go beyond treating their patients’ core diseases, and create products that will impact all aspects—physical, social, and mental—of their lives.
Reference: Entrepreneurship