Patients for Patients

The information age is dramatically changing how people treat and manage their illnesses. Patients not only use the internet to search for health information, but they also use blogs, online communities, and other forums to give and receive advice, share personal experiences, and build their support network. In short, the internet has empowered many patients to take a more active role in their own treatment.

PatientsLikeMe.com

The PatientsLikeMe website is at the vanguard of this trend. The site describes itself as "… a new system of medicine by patients for patients. We're here to give patients the power to control their disease and to share what they learn with others." The website's premise is simple: Collect and compare information from patients so that they can find the best treatment regimen. Currently, the website has forums for ALS, primary lateral sclerosis, progressive muscular atrophy, Parkinson's disease, multiple sclerosis, HIV/AIDS, and mental health conditions (anxiety, depression, OCD, bipolar disorder, and PTSD), and may expand in the future. PatientsLikeMe had about 7,000 members as of March 2008, and each member is asked to enter the details of his or her medical history, symptoms, and treatment. The website's algorithms quantify the data entered, and produce personalized charts and graphs to help patients track changes over time. New data is also added to the database of information on each condition, so that members can see all of the treatments being used by members with a given condition, or search for other members whose case histories closely match their own. PatientsLikeMe also offers forums for members to share information and participate in discussions, and a blog with posts from the site staff.

PatientsLikeMe's testimonials page is full of praise from grateful members. Two patients interviewed in a New York Times article recounted how the site had improved their lives. One MS sufferer used it to learn the best method of self drug injection. Another MS sufferer increased his drug dosage after comparing his own treatment regimen to that of hundreds of other members, and reports that his symptoms are the mildest they've been in 14 years.

The site's co-founder, James Heywood, claims that after enough data has been collected, they will be able to mathematically model each patient and predict that person's course of disease. While only time can tell whether such claims will be fulfilled, the company has already filed a patent for such prediction tools. In the New York Times article, Heywood also boasted that "people who use [PatientsLikeMe] will live longer; people who don't won't."

Not content to just change the behavior of patients, PatientsLikeMe also wants to establish "data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits." Information gathered by the site has been used in research projects, and the website has also recruited participants for clinical drug trials. PatientsLikeMe also plays a direct role in research and patient advocacy. The company published a study in the May 2008 issue of the European Journal of Neurology, which reported that doctors often failed to inform ALS patients about the psychological symptoms the disease may cause, and that most patients wanted doctors to provide them with such information. As a private company, PatientsLikeMe also hopes to make a profit by selling anonymous patient data to pharmaceutical companies and other potential clients.

Questions and Concerns

PatientsLikeMe offers definite benefits, but also raises many questions and concerns. In a sense, the site's members are guinea pigs. When patients change their treatment based on the experience of other members or new research findings, they may be basing their decisions on inaccurate data, misinterpreted data, or experimental data that is not ready for human use. Although the website advises members to consult a doctor before changing their treatment, it also encourages users to act on what they learn on the site. For instance, a research paper published in November 2007 reported that lithium seemed to slow the progression of ALS. PatientsLikeMe publicized the findings, and by March 2008, 109 members were taking lithium, despite the fact that the treatment had not been approved for patient use. While some patients feel that they have nothing to lose, following such experimental and unproven treatments – often without proper medical supervision – could seriously endanger their health.

Patient privacy and confidentiality is another issue. Since members voluntarily provide their information, the site is not bound by HIPAA or other laws that protect patient privacy. Rather than focusing on their privacy policy, PatientsLikeMe emphasizes an openness philosophy. The site argues, "Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed … Patients also can't get the information they need to make important treatment decisions. … When you and thousands like you share your data, you open up the healthcare system. … Best of all, you help bring better treatments to market in record time." The downside of such openness is that members give up control over which "approved vendors" their health information may be sold to, and how that information may be used. In the New York Times article, one doctor argued that national standards and laws should be created for private companies, such as PatientsLikeMe, that traffic in patient data. PatientsLikeMe is working to attract pharmaceutical companies as clients, and I would argue that this creates potential conflicts of interest for a website that provides information on drug regimens.

The success of PatientsLikeMe shows that patients want to play an active role in managing or treating their disease, and they want more information than they're receiving from their healthcare providers. This trend is likely to grow, as the younger generation is accustomed to looking for information online, and as the baby boomer generation ages, and turns to the internet for help on managing their health. If sites like PatientsLikeMe become a widespread phenomenon, healthcare providers will need to understand how they work and incorporate them into patient care. In the future, physicians may ask patients which internet health sites or groups they subscribe to, inform patients of the benefits and risks associated with such sites, and direct them to reliable sites similar to the way they currently refer patients for support groups or clinical trials. Regulations will be required to ensure that online healthcare companies provide accurate information, protect patient privacy, and safeguard patients' rights in other ways.

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