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If you’ve been diagnosed with a medical condition, you may feel somewhat isolated. After all, the only people who know about it are you, your doctor, and your family. If you want to connect with others who share the same condition, share your experiences with others, and provide much needed data researchers can use to develop effective treatments, you’ll want to visit PatientsLikeMe.com. This online data sharing platform allows users with chronic illnesses to track their symptoms and treatments over time. Users can follow others with the same condition to see what treatments have been most effective. The site also boasts message boards on various topics, including individual conditions, which allow users to get advice from one another.
Recently, PatientsLikeMe received a lot of attention for a study published in Nature Biotechnology. The study refuted research published in 2008 that found lithium carbonate to be effective in slowing the progression of amyotrophic lateral sclerosis (ALS). ALS is a neurodegenerative disease more commonly known as Lou Gehrig’s disease. Medical research is constantly refuted, but what makes this significant is that a social networking platform – PatientsLikeMe – was used in all stages of the study, including finding participants and measuring results.In an April press release, PatientsLikeMe Co-Founder Jamie Heywood claims that the study “is the first time a social network has been used to evaluate a treatment in a patient population in real time.”

Some of the major benefits of this research method, as discussed in the Nature Biotechnology article are speed, patient access, the availability of control participants and cost. The study took just nine months from its inception to sharing results with the public, which is a huge change from typical laboratory studies that can take years to produce results. The online methodology also allowed researchers to access thousands of people with ALS without worrying about location. Researchers were able to easily select participants being treated with lithium, as well as those who weren’t for control purposes. Finally, there is the issue of cost. Online trials have the potential to save thousands of dollars per participant compared to traditional studies. This means that research that is not heavily funded, can progress quickly and provide critical information and lead to more effective treatment.

Of course, online research methods come with several limitations. One major concern when using online tools is the reliability of self-reported data. Another major issue is the lack of random assignment of participants into groups to control for covariates. And the lack of a double-blind study means that both researchers and participants could be unintentionally biased in their reporting.

Unlike traditional studies, patients using PatientsLikeMe chose to take the treatment and therefore may have been overly optimistic in reporting results. Traditionally, patients would not know whether they were given the treatment or a placebo.

Sites like PatientsLikeMe have other potential implications besides those faced in clinical trials. As previously mentioned, patients use the discussion boards to get advice from other patients with the same condition. Such advice could be harmless, but there is the chance that getting advice from peers rather than a doctor could potentially be dangerous.

For example, some of the patients on PatientsLikeMe suffer from eating disorders or other psychiatric illnesses with symptoms such as self-mutilation. When reading through forums on these topics, users are likely to see, “Warning: Possible triggers” on the subject lines of posts, cautioning them that the contents may provoke others to engage in such activities. There’s no definite answer as to whether PatientsLikeMe is harmful or beneficial in these cases, but it is something to consider.

PatientsLikeMe, and similar platforms, has a lot of potential for medical research as well as allowing patients to be more involved in their medical treatment. However, not all studies are a good fit for online research, making traditional methods still relevant and important.