PatientsLikeMe and the tale of three brothers

In 2004, Ben and Jamie Heywood launched a social networking site called PatientsLikeMe (PLM) (http://www.patientslikeme.com). They were motivated by their younger brother Stephen’s tragic journey with amyotrophic lateral sclerosis (ALS) and the desire to connect and share information with other ALS sufferers. Members of the PLM community create a profile to record and track their health over time, including quality of life, symptom control, and treatments and their efficacy and side effects. Members can also connect through online discussion, and the site has over 110 000 members with a counter on the homepage rising every few minutes. From April 2011, the site has opened up to all health conditions, after initially focusing on a few neurological disorders, such as ALS, multiple sclerosis and Parkinson disease. The savvy developers have produced an appealing Web 2.0 interface and the site links to other online platforms such as Facebook, Twitter, YouTube, blogs and free podcasts on iTunes. PLM’s stated aim is to help patients answer the question, “Given my status, what is the best outcome I can hope to achieve and how do I get there?”.1

The therapeutic effect of online communities is mixed2,3 and often not sustained, as are the effects of patients recording and monitoring their own health.4 PLM member postings declare the value of diarising their symptoms and treatments and also cite the importance of feeling that they are helping others by sharing their stories. Patients can print off a summary of their profile, called the Doctor Visit Sheet, to share with their doctor, providing a modern version of the patient diary. Members can opt to have their profile shared with other community members or to be publicly available. Some post video clips of their stories via YouTube, and many use the discussion forum facility, which has a code of conduct restricting industry and others from directly contacting patients. Members can delete previously entered information so that it is no longer visible to other community members, but PLM keeps the data indefinitely. Removing a profile requires contacting PLM staff and cannot easily be done independently by the member.

PLM also promotes itself as a research tool, and this is where the site becomes more controversial. Patient profiles form a huge database of symptoms and treatment effects that can be accessed by researchers from academia and industry for a fee. PLM promotes this as a way to access patient data and “bypass around restrictive privacy rules that tie scientists in red tape”5 since data sharing is part of the user agreement for PLM community members. PLM openly declares itself as a for-profit company and was named by CNN Money in 2007 as one of the “top ten start-up companies most likely to upend existing industries — and spawn entrepreneurial opportunities”.5 Industry can buy access to particular PLM data, can deliver surveys through the site, can access PLM “leaders” (online expert patients) or pay for particular features to be added to the site for particular conditions. There are strong similarities here with Facebook, which has been criticised for profiting from companies accessing personal profile data for marketing and other purposes. Although PLM started out using Web 2.0 technology to find potentially effective treatments for rare conditions such as ALS through online data sharing, it now faces the challenge of balancing such goals with profit-driven ones.

Used responsibly, PLM could be a revolutionary tool for medical research, particularly if the methodological limitations of its data are openly acknowledged. There is huge potential to identify case series for rare conditions and to develop hypotheses for effective treatments, which should be more rigorously assessed. One of the greatest strengths of the site is the wealth of patient-relevant outcome data, which may better inform researchers designing clinical trials. The large longitudinal datasets of chronic disease treatments can also provide adverse event data that may not occur in clinical trials due to limited follow-up periods and underpowering for unforeseen rare events. PLM monitors the site for serious adverse events and reports them to the United States Food and Drug Administration if appropriate. There are also rich data on non-pharmacological treatments used by patients and their perceived effects. The site can also link people to the clinical trials register to look for trials that they may wish to join.

Although the PLM dataset is large and expanding, its degree of representativeness needs to be borne in mind. PLM claims to have 10% of all newly diagnosed ALS sufferers in the US on its site. Generalisability is an issue that PLM faces together with other researchers, as the opt-in requirements imposed by privacy legislation can significantly change sample characteristics.6

Like Facebook, PLM keeps extending the capabilities of its site, and members can invite their care team to view their profile. Is this a step towards online health care on social networks? There’s no doubt that social networking platforms for patients are potentially powerful tools for patient empowerment and for improving the efficiency of hypothesis development, patient-centred designs for clinical trials, and identifying potential serious adverse events of treatment. However, a number of questions arise. Should these platforms be left to the jurisdiction of private enterprise or should the non-profit or government sector address this need? Is there a need to regulate aspects of social network sites for patient protection or should people simply be better informed about the benefits and risks of social network sites?