What is PatientsLikeMe?
PatientsLikeMe is a health information sharing website for patients. Only here do patients like you have the opportunity to share both personal stories and health data about your conditions to help uncover great ideas and new knowledge.
By sharing information on our site, you can put your disease experiences in context and find answers to the questions you have. You can:
• know detailed information about every medication, supplement, or device used to treat patients like you and learn about what works;
• connect easily with patients that have the same conditions, experiencing the same symptoms or using similar treatments; and
• learn from patients like you.
Imagine partnering in real time with doctors, researchers and companies to improve the understanding of your disease and 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 the lives of patients like you and transform healthcare by putting patients back at the center of the system.
What are the company's core values?
PatientsLikeMe was founded on four core values. These values shape every decision we make—from the way we build and enhance the site, to what business partnerships we develop.
Honor the trust patients place in us
Simply stated, this means "Patients First." You, our patients, trust us with your most valued health information. We honor that trust, and we are dedicated to advancing the knowledge of your conditions with the information you share.
We believe that sharing health information is good. Why? Because sharing and openness will drive massive improvement in healthcare. Read more in our Openness Philosophy.
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.
When you see our site, we want you 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 can 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 the risk and reward of each possible choice is transparent and known.
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, came up with the idea for 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 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 for the site. which has signed a HIPAA compliance agreement and earned SAS Type II certification. We also use state of the art firewalls for our production servers, and our systems have been developed to prevent the most common security vulnerabilities. For secure browsing, we use 128-bit SSL encryption using Verisign certificates. Finally, when we do any testing and development work to the site, we use sanitized versions of the site, with all personally identification information stripped out.
What conditions does PatientsLikeMe include?
Any patient with any medical condition can now join PatientsLikeMe.
We started in 2005 by building a strong ALS/MND community (and extended that to include Primary Lateral Sclerosis (PLS) and Progressive Muscular Atrophy (PMA)). Over the course of six years, we expanded the site to include communities 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), Fibromyalgia/Chronic Fatigue/ME, Epilepsy, and Organ Transplants.
We always planned to continue expanding the site to include other diseases and conditions so thousands of patients like you could benefit from this powerful data-sharing platform. To date, there are hundreds of thousands of patients sharing more than 500 conditions on PatientsLikeMe.
How does PatientsLikeMe make money?
We take the information patients like you share about your experience with the disease and sell it 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. Except for the restricted personal information you entered when registering for the site, you should expect that every piece of information you submit (even if it is not currently displayed) may be shared with our partners and any member of PatientsLikeMe, including other patients. 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.
PatientsLikeMe is a for-profit company (with a not-just-for-profit attitude). Every partnership we develop must bring us closer to aligning patient and industry interests. Our end goal is improved patient care and quality of life.
Does PatientsLikeMe have advertising?
We're not pursuing an ad-based business model right now. We want to preserve the sanctity of your experience on the site. Our business is based on aligning your interests as patients with industry interests. To do this, we share your data and experiences with industry to help them better understand the real world course of diseases.
As a member of PatientsLikeMe, what can I do on the site?
Our website is designed to capture the essence of your experiences as a patient by charting the real-world course of your disease. How?
You can share everything about your health on PatientsLikeMe -- from your diagnosis history and disease progress to specific symptoms and treatments. By answering simple questions about your health conditions, you create a profile with helpful charts and timelines so you can watch the progress of your health over time. You can also get your care team involved, and keep your doctors up to date on everything you’re charting.
You’re not alone. Because you are sharing information on all your health conditions, you can then search specifically for other patients just like you. Want to find someone with the same conditions, disease longevity, treatments, symptoms, geographic location, age, gender or any combination of those? You can and you will.
Where do you fit in? You can find out, and see what others are experiencing, through our symptom and treatment reports. You can also ask questions, share tips and offer support to other members through our forum and/or private message system.
Need more help? Email email@example.com