I have spent some time over the past few weeks making my way through the popular website PatientsLikeMe.com The website is a growing networking site in which patients can interact with other patients who are coping with the same disease. There are no medical professionals involved with the information posted on this site. Instead, patients post questions and answers based on their own experiences and provide data on they symptoms they experience and how the medications they are taking effect their quality of life. The goal of PatientsLikeMe is to make information readily available for the site's members as well as the professionals in the healthcare industry. Its value stems from the the data given in real time and in large numbers.
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.
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.
The different colors signify a varying sate of quality of life on the website PatientsLikeMe.com
So how is the abundance of information organized?!?
PatientsLikeMe has compiled a great collection of strategies to communicate information. Even the colored human-like figures above are used by the website to convey data. Below are a few noteworthy examples of how PatientsLikeMe has become so practical.
User's Symptoms For each disease, PatientsLikeMe compiles a list of potential symptoms for users to choose from. As more users input what symptoms they experience, the website begins to rank the most common symptoms and collects data on the severity to which these symptoms are felt. Then, for the most commonly felt symptoms, the site creates the color coded sliding graphs seen on the left and charts this next to your own rating for severity of symptoms (Interesting side point- the site enlarges the diamond depicting your own severity rating as you input a worse rating). As seen in the picture, if you scroll your mouse over sections of the bar, even more information is provided, indicating how many patients can be described by that category, This side-by-side layout makes it easy to compare your own status with others who share your condition.
Analysis of Anxious Mood as symptom Well "so far so good," but let's say I am the type of user who likes A LOT of information. Right now you have only given me some information...
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.
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.
 Screenshot on the drug Clonzepam | 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. |  Screenshot on the drug Clonzepam |
Charts are good for research, but let's say I am a simple patient who just wants to know what other simple patents have to say about the drug Clonazepam?
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.
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.
A screenshot from the Doctor Visit Sheet A final tool that most relates to the app we are building is what PatientsLikeMe calls their "Doctor Visit Sheet." The website gives it users the capability to compile all of their inputted data onto a PDF sheet that they can print and email to share with their doctor. The data sheet tracks measurements of QOL, history of symptoms as well as the different labs and tests that a patient has had. Though the data sheet can become lengthy, using similar graphing techniques to those above, it can greatly enhance the communication between a patient and their physician. A noteworthy technique that PatientsLikeMe uses is color coded line graphs. The graphs are able to save space while maintaining the ability to portray progression.
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.
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.
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