PatientsLikeMe ™

What is PatientsLikeMe?

PatientsLikeMe is a treatment, symptom and outcome sharing community for patients with life-changing conditions.   What's different about our company is that we've created an unparalleled platform that enables patients the opportunity to share their personal stories and health information in a way that illuminates great ideas and new knowledge about their diseases.  

By sharing information on our site, our patient members put their disease in context and find answers to the questions they still have.  They can:

• know detailed information about every medication, supplement, or device used to treat patients like them
• learn about treatments that work and having the ability to easily connect with patients using them; and
• gain additional insight into a full range of disease symptoms and solutions from patients like them.

Imagine patients partnering in real time with doctors, researchers and companies to accelerate the development of new treatments? This is what is at the heart of the PatientsLikeMe vision –the kind of information sharing that will impact patients' lives and transform healthcare by putting patients back at the center of the system.

Why was PatientsLikeMe founded?

In 1999, Stephen Heywood was diagnosed with ALS (Lou Gehrig’s disease) at the age of 29.   Inspired by Stephen’s experiences with the disease, his brothers, Ben and Jamie, and long-time family friend, Jeff Cole, conceptualized a community of patients, doctors, and organizations that inspires, informs, and empowers individuals.   The company launched its first beta community for ALS in March 2006.

What are the company's core values?

We have four core values on which this company was founded. These values shape every decision we make--from the way we build and enhance our product to what business partnerships we develop.

Honor the trust patients place in us
Simply stated, this means "Patients First." Our patients trust us with their most valued health information. We honor that trust, and we are dedicated to advancing the knowledge in the disease with the information they share.

Openness
Per our Openness Philosophy, we believe that sharing health information is good. Why? Because sharing and openness will drive massive improvement in healthcare.

Transparency
No surprises. Our members shouldn't be surprised by anything we do. Our goal is to disclose what we do with members' information, how we make money, as well as all of our partnerships on the site.

Wow!
When people see our site, we want them to think, "Wow!"

Because trust is our most valuable asset, we want to know if you ever hear or see anything that concerns you about the ethics of how we operate PatientsLikeMe or the website. You may contact our three founders--Ben, Jamie and Jeff. We want to hear from you personally.

What is the future of healthcare in a PatientsLikeMe world?

We envision a world where information exchange between patients, doctors, pharmaceutical companies, researchers and the healthcare industry can be free and open; where, in doing so, people do not have to fear discrimination, stigmatization or regulation; and where the free flow of information helps everyone.  We envision a future where every patient benefits from the collective experience of all, and where risk and reward of each possible therapeutic choice is transparent and known.

What safeguards does PatientsLikeMe have in place to secure data?

We follow the best practices in security as per HIPAA Security Compliance. We use a respected, secure hosting provider which has signed a HIPAA compliance agreement, and which has earned SAS Type II certification. In addition to this secure hosting environment we use state of the art firewalls for our production servers, and our systems have been developed to  preclude the most common security vulnerabilities. For secure browsing we use 128-bit SSL encryption using Verisign certificates. Finally, our test and development environments use sanitized versions of our production databases which have removed any personal identification information.

What disease communities does PatientsLikeMe include?

We started in 2005 by building a strong ALS/MND community (which now includes Primary Lateral Sclerosis (PLS) and Progressive Muscular Atrophy (PMA)), and have expanded to provide support for Parkinson's disease, Multiple Sclerosis, HIV/AIDS, Mood conditions (including depression, anxiety, bi-polar, obsessive-compulsive disorder and post-traumatic stress disorder), Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP),  Devic's Neuromyelitis Optica (NMO) and Fibromyalgia/Chronic Fatigue/ME. We have also recently launched a new community for Epilepsy. We plan to continue to expand to other diseases and conditions. Our focus is extending this powerful platform to the thousands of patient communities that will benefit from this concept.

How does PatientsLikeMe make money?

We take the information patients share about their experience with the disease, and sell it in a blinded, aggregated and individual format to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services.  We do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent.  Because we believe in transparency, we tell our members exactly what we do and do not do with their data.  

By selling this data and engaging our partners in conversations about patient needs,  we're helping them better understand the real world medical value of their products so they can improve them. We are also helping companies accelerate the development of new solutions for patients.  Our end goal is improved patient care and quality of life. 

Does PatientsLikeMe have advertising?

No, we have chosen not to pursue an ad-based business model right now. We want to preserve the sanctity of our user experience.  Our business is based on aggregating anonymized information to provide insights to industry partners derived from the shared real-world experiences of our patient members.   

What do PatientsLikeMe members do on the site?

We've created a website that we believe can capture the essence of patients' experiences by charting the real-world course of their disease. How?

• Share
  
  Our patients share everything from their diagnosis history and disease progress to specific symptoms and treatments. They answer simple questions, and their information gets translated into helpful charts and timelines so they can watch the progress of their condition over time. We also provide them resources to get their care team involved, and keep their doctors up to date.



• Find
  
  Patients want to find other patients like them to learn from one another. Because they are sharing this information with our community, they can then search specifically by disease longevity, treatments, symptoms, geographic location, age, gender and more.



• Learn
  
  Our patients learn about treatments and symptoms for their condition through the real-world experiences of patients like them. Each community also has a lively forum where patients ask questions, share tips and offer support.