I see PatientsLikeMe serving two purposes. Firstly, the site can answer a patient's small questions that do not justify a doctor visit. Simply acting as a support network, the site helps patients understand what are normal symptoms and side effects and what indicates a more urgent complication. Such information can bring great comfort to patients who now know they are not alone. As I read through the forums I was able to find house-remedies to some of these side effects and symptoms; PatientsLikeMe creates a collective knowledge of trial-and-error experiences from its patient users.
The second use of this compiled data is for those in the healthcare industry. Researchers, clinicians, pharma companies and more can put the patient provided information to valuable use. The founders of this website have even suggested that new forms of clinical research can be completed through this website and have published over 30 papers. Research on PatientsLikeMe is given in real-time and can be interactive. It can be made to encompass as broad or narrow of a population size as needed. It is relatively cheap to find potential participants. For all of the reasons, PatientsLikeMe has a lot of value to offer the research field.
So how is the abundance of information organized?!?
In PatientsLikeMe just about everything is click-able. Let's say you want to know more about: Crohn's patients and feeling Anxious. Simply clicking on the symptom "Anxious Mood" brings you to the new webpage seen on the right. The breakdown of severity is now crisply shown in the color coded pie chart. Below, there is a long list of medications organized in a vertical bar graph to show which medications are the most popular among the websites users. Following the same principles, the blue text of both the different medications as well as the number of users is click-able as well and lead to webpages explained below.
First, hitting the top medication for anxious mood, Clonazepam , leads to the webpage seen on the right and left. Now we have access to a wealth of similarly organized information on Clonazepam: what people use it for, what are the side effects, the different dosages that have been prescribed and the reason some patients have stopped using it, PatientsLikeMe leaves nothing a mystery. As a potential user of Clonazepam, I can now see the risk associated with the drug and weigh the option of using it.
PatientsLikeMe has an additional feature that focuses on the source of all of its information. Whenever data is represented (look at the many screenshots above) you can always "zoom" in to the the patients that were the source of the data. Wherever there is a blue number next to a category (a specific symptom or treatment for example) you can click to get a screen shot like the one shown on the left. This feature gives PatientsLikeMe a personal feel.
Here, patients can read comments written by those that have already gone through the experiences. You can even send other patients a private message and begin a discussion with them about the issues that are bothering you. The hard-data is complimented by this personal component and allows users to find solutions to their particular questions that need human interaction to answer.
When their brother was diagnosed with ALS, two MIT mechanical engineers along with a close family friend experienced shortcomings within the healthcare system. They did not understand why it should be so difficult to get in touch with other ALS patients and learn from their past experiences. They were frustrated that they were starting from scratch; experimenting with every new treatment instead of moving forward from where a past ALS patient left off. This frustration lead to a vision and the vision has played out as PatientsLikeMe. The goal of the site, as stated by one if its founders Jamie Heywood, is "everyone learns from the experience of everyone else on every meaningful variable that can effect the outcome, in real time, across the whole medical system." PatientsLikeMe is embracing a new healthcare culture in which patients can take control and affect their health outcomes. Creating a forum for patients to interact, enables patient to become their greatest advocate in reaching the best outcome that can be achieved.