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Social networking and healthcare,[object Object],How to use PatientsLikeMe.com,[object Object],to find and share information ,[object Object],about your medical condition,[object Object]
Why is PatientsLikeMe.com useful?,[object Object],You can share stories, treatments, drug side effects and more with other patients.,[object Object],Collective knowledge allows you to put your disease in context. Making data about your health open to family, friends and doctors could enhance the quality of care.,[object Object],If made available to researchers, the amount of patient data can help determine if drugs and treatments are having the desired effect.,[object Object],Openly sharing health histories can lead to answers to questions which doctors sometimes can’t provide. ,[object Object]
How does it work?,[object Object],PatientsLikeMe.com is a social networking tool that works like Facebook, except it’s about healthcare.,[object Object],To use it, you have to register and create a personal profile. It’s free, fast and easy.,[object Object],Although your information will be visible to other members, you can secure it from being visible to the online public. ,[object Object],The website does not provide medical advice, nor is it meant to be a substitute for professional medical advice and treatment.,[object Object]
You’re not alone!,[object Object],Three MIT engineers in 2004 founded PatientsLikeMe.com after personal experiences with ALS (Lou Gehrig’s Disease).,[object Object],Almost 70,000 patients with Epilepsy, Multiple Sclerosis, ALS/Motor Neuron Disease, HIV, PSP, Transplants, Parkinson's Disease, Devic's NMO, Fibromyalgia and Chronic Fatigue Syndrome, MSA, and Mood Conditions use PatientsLikeMe.com to better manage their health, treatments, and symptoms.,[object Object]
Let’s get started!,[object Object],Open an Internet browser window.,[object Object],Type www.patientslikeme.com in the website address bar.,[object Object],Push enter. ,[object Object],Website address bar,[object Object]
The homepage will look like this:,[object Object],Take a few minutes to look around the website and get familiar with ,[object Object],the different pages you can go to by clicking on links. ,[object Object],If you get lost, simply,[object Object],click on the “go back” button on the upper right corner of your screen until you’re back at the homepage. ,[object Object]
Registering to join is a two-step process. First, you will create an account. Then, you will create a profile.,[object Object],To get to the registration screen, click the yellow “Join Now!” button on the left side of the homepage. ,[object Object]
You will be asked to provide some personal information.,[object Object],You need an email address to create an account.,[object Object],Your password must be between 5 and 40 characters long.,[object Object],Don’t forget to check this box by clicking on it.,[object Object]
In step two, you will create private ,[object Object],information for your profile. ,[object Object],Your username must be 5 or more characters long. The website doesn’t recommend using your actual name, or part of your name, in your username.,[object Object],Do not select this option, otherwise your profile may be searchable online, even in Google.,[object Object],Once you click “Join,” you’re a registered member! If there were errors during any of the two steps, the registration screen will re-appear and show you where to make corrections. Then click “Join” again. Repeat the process until your registration is accepted.  ,[object Object]
Important tips:,[object Object],Identity thieves are criminals. They love to find passwords, usernames and any other forms of online account information and use them.,[object Object],Write down the password and username you create for your account. This also avoids problems in the future with logging in.,[object Object],Keep this information secured until you memorize it. Then, destroy the paper on which you wrote it down!,[object Object]
When your registration is finished, you will get this screen, telling you to check your email. ,[object Object]
You will need to open a new browser window to check your email. ,[object Object],PatientsLikeMe.com send you a message (like the screenshot below) confirming registration and instructions about what to do next.,[object Object]
After you click on the link in your email, a new browser window will open, asking you to login with your username and password.,[object Object],PatientsLikeMe.com will send you an email confirming your registration. Click on the link provided in the email and a new browser window ,[object Object],will open, asking you to login (screenshot below). ,[object Object],Click “Login” when you’re ready ,[object Object],to enter the website.,[object Object]
This is a sample screenshot of your homepage. It’s similar to what you will see each time you login. ,[object Object],Toolbar,[object Object]
The website is organized into seven sections. Click on the tabs in the toolbar to get to each section and use the toolbar to navigate around the website. ,[object Object],Homepage,[object Object],Research information is here.,[object Object],Your profile ,[object Object],is where you share your health data. Answer some questions to create your profile so you can compare yourself to patients like you.,[object Object],You're a part of a community of patients who share your condition. The more information about yourself you provide, the better PatientsLikeMe.com can help you find others just like you. Search by disease longevity, treatments taken, gender, geographic location, and more. ,[object Object],You have everything you need to get answers to your questions while helping others at the same time, with treatment and symptom reports, a discussion forum, private messaging, and more. ,[object Object]
The following slides will briefly explain how each section works and show sample screenshots. Keep in mind…,[object Object],The toolbar lets you navigate the website’s seven sections, and the tabs will never go away.,[object Object], On the left side of each page is a list of menu options. Use these to navigate each section. Each section has a lot of different pages, but the menu items will never go away.,[object Object],Clicking on a menu item may take you to a different section. Don’t worry if this happens. It’s easy to get back to where you were, and nothing will happen to your information.,[object Object]
Use the menu on the left side of the profile section to build and edit your profile. Each link will take you to a page for you to fill out. Below is a sample screenshot. ,[object Object],The website keeps track of when others look at your profile.,[object Object],By clicking here, you can ask your patient, caregiver, doctor, therapist or friends to sign up and join you on PatientsLikeMe.com.,[object Object]
In the patients section, you can browse profiles or search for people using search terms related to their condition, symptoms or treatment. ,[object Object],When you “subscribe” to someone, you exchange each other’s information and updates. You make updates in your profile section. Their updates appear on a “member feed” on your homepage.,[object Object]
The hundreds of forums for you to join are organized by subject tags and topic. Updates people make to the forums you belong to appear in a “forum feed” on your homepage.,[object Object]
Community treatment reports related to your condition are detailed in the treatment section, and treatment updates show up in a “treatment feed” on your homepage.,[object Object]
Search or browse symptom reports in the symptoms section to learn about others’ symptoms and what they’re doing about them. ,[object Object]
Research,[object Object],A PatientsLikeMe.com research team collects and presents tools and research findings for patients in the research section.,[object Object],The research team collaborates with patients, academics and industry leaders.,[object Object],It designs and runs studies that contribute to the understanding of each of the conditions it serves and to the evolution of the website. ,[object Object],You can make suggestions to the research team, or just go the section for news, updates and information.,[object Object]
When you’re finished:,[object Object],Click “log out” to log out of your account. ,[object Object],And when you return:,[object Object],Enter your username and password. Click “login.” ,[object Object]
A few more things…,[object Object],PatientsLikeMe.com lets medical patients, their family and friends and healthcare providers use technology to exchange information in new ways.,[object Object],Members are asked not to share other patients’ information outside the website or with anyone who is not a member. ,[object Object],Social networking tools are still subject to appropriate manners. Avoid libelous statements and apply interpersonal protocol expected in any social situation. ,[object Object],Good luck, and enjoy using PatientsLikeMe.com!,[object Object]

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Notas del editor

  1. Sheridan, B. (2008, October 16). ‘Open wide...' the open-source movement worked wonders for software. can it do the same for diabetes and other illnesses?. Newsweek, Retrieved from http://www.newsweek.com/2008/10/15/open-wide.html