Social networking and healthcare

How to use PatientsLikeMe.com to find and share information about your medical condition

Why is PatientsLikeMe.com useful?

• You can share stories, treatments, drug side effects and more with other patients.

• 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.

• If made available to researchers, the amount of patient data can help determine if drugs and treatments are having the desired effect.

• Openly sharing health histories can lead to answers to questions which doctors sometimes can’t provide.

How does it work?

• PatientsLikeMe.com is a social networking tool that works like Facebook, except it’s about healthcare.

• To use it, you have to register and create a personal profile. It’s free, fast and easy.

• Although your information will be visible to other members, you can secure it from being visible to the online public.

• The website does not provide medical advice, nor is it meant to be a substitute for professional medical advice and treatment.

You’re not alone!

• Three MIT engineers in 2004 founded PatientsLikeMe.com after personal experiences with ALS (Lou Gehrig’s Disease).

• 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.

Let’s get started!

• Open an Internet browser window.• Type www.patientslikeme.com in the website

address bar.

• Push enter.

Website address bar

The homepage will look like this:Take a few minutes to look around the website and get familiar with

the different pages you can go to by clicking on links.

If you get lost, simplyclick on the

“go back” button on the upper

right corner of your

screen until you’re back

at the homepage.

Registering to join is a two-step process. First, you will create an account. Then, you will

create a profile.

To get to the registration screen, click the yellow “Join Now!” button on the left side of the homepage.

You will be asked to provide some personal information.

Your password must be between 5 and 40 characters long.

Don’t forget to check this box by clicking on it.

You need an email address to create an account.

In step two, you will create private information for your profile.

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.

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.

Do not select this option, otherwise your profile may be searchable online, even in Google.

Important tips:

• Identity thieves are criminals. They love to find passwords, usernames and any other forms of online account information and use them.

• Write down the password and username you create for your account. This also avoids problems in the future with logging in.

• Keep this information secured until you memorize it. Then, destroy the paper on which you wrote it down!

When your registration is finished, you will get this screen, telling

you to check your email.

You will need to open a new browser window to check your email.

• PatientsLikeMe.com send you a message (like the screenshot below) confirming registration and instructions about what to do next.

PatientsLikeMe.com will send you an email confirming your registration. Click on the link provided in the email and a new browser window will open, asking you to login (screenshot below).

Click “Login” when you’re ready to enter the website.

After you click on the link in your email, a new browser window will open, asking you to login with your username and password.

This is a sample screenshot of your homepage. It’s similar to what you

will see each time you login.

Toolbar

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.

Your profile is where you share your health data. Answer some questions to create your profile so you can compare yourself to patients like you.

Homepage

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.

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.

Research information is here.

The following slides will briefly explain how each section works and show sample screenshots. Keep in mind…

• The toolbar lets you navigate the website’s seven sections, and the tabs will never go away.

• 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.

• 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.

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.

The website keeps track of when others look at your profile.By clicking here, you can ask your patient, caregiver, doctor,

therapist or friends to sign up and join you on PatientsLikeMe.com.

In the patients section, you can browse profiles or search for people using search terms related to their condition, symptoms

or treatment.

• 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.

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.

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.

Search or browse symptom reports in the symptoms section to learn about others’ symptoms and what they’re doing about them.

Research

• A PatientsLikeMe.com research team collects and presents tools and research findings for patients in the research section.

• The research team collaborates with patients, academics and industry leaders.

• It designs and runs studies that contribute to the understanding of each of the conditions it serves and to the evolution of the website.

• You can make suggestions to the research team, or just go the section for news, updates and information.

When you’re finished:Click “log out” to log out of your account.

And when you return:Enter your username and password. Click “login.”

A few more things…

• PatientsLikeMe.com lets medical patients, their family and friends and healthcare providers use technology to exchange information in new ways.

• Members are asked not to share other patients’ information outside the website or with anyone who is not a member.

• Social networking tools are still subject to appropriate manners. Avoid libelous statements and apply interpersonal protocol expected in any social situation.

• Good luck, and enjoy using PatientsLikeMe.com!