PatientsLikeMe ™

How do I manage my privacy settings to determine how I share my information?

On your Account section, in the Privacy Settings page, you can choose whether your profile will be publicly accessible or visible only to PatientsLikeMe members. Please read our Openness Philosophy to find out why you should consider making your profile public. By making your profile visible, non-PatientsLikeMe members will be able to view your profile. Account information, such as your real name, address, birth date, and email address will not be displayed. See our privacy policy for more details.

Because the value of PatientsLikeMe is in helping other patients learn from your experience, we hope that you feel comfortable enough to make your profile as visible as possible.

How do I update/edit my treatments?

It is easy to add, update, or remove a treatment from your treatment regimen on the treatment history page.

To add a new treatment, click the “Add” button at the bottom. On the next page, choose your treatment from the list available. If you do not see the treatment you want, you can add it in the box at the bottom that says “I am taking something else.”

Once you have added a treatment, you can update its information on the treatment history page by clicking “update” and then clicking one of the following:

• To change information you have entered, click “edit”.
• If your dosage has changed since you first entered your treatment, click “I've changed dosage”. On the following page, you can indicate when you changed to dosage and what the new dosage is.
• If you are no longer taking a treatment, click “I've stopped taking this”. On the following page you can indicate when you stopped taking it and for what reason.
• If you would like to completely delete any record of your taking that treatment, click “Delete”. Note that if you simply want to report that you are no longer taking the treatment, you should should instead click “I've stopped taking this”.

How do I add more information and pictures about myself?

You can add more detailed information about yourself (or your families, hobbies, pets, whatever you like) in the More About Me section of your profile.

To add more details to your profile:

1. Go to your profile.
2. Go to About Me.
3. Add your text, and if you want to add a picture:
   1. Click on the tree icon.
   2. Browse for the picture you want to use (i.e. find it on your computer)
   3. When you have it, click Upload Picture and wait while it gets uploaded.
   4. When it's done you'll see a green bar at the top with the message "Your profile picture has been updated."
   5. Click on picture.
   6. Browse for the picture you want to use (i.e. find it on your computer)
   7. When you have it, click Upload Picture and wait while it gets uploaded.
4. Click Update
5. When it's done you'll see a green bar at the top with the message "Your bio info was successfully updated.."

Note that the Rich Text Editor does not currently work in Safari.

How do I add a picture to my profile?

To upload a picture from your computer to your profile:

1. Go to your profile.
2. Click on picture.
3. Browse for the picture you want to use (i.e. find it on your computer)
4. When you have it, click Upload Picture and wait while it gets uploaded.
5. When it's done you'll see a green bar at the top with the message "Your profile picture has been updated."

How do I change my email address?

You can change your email address on your Account page.

How do I manage my groups of patients?

Creating patient groups is a great way to track a group of friends or other patients with similar characteristics.

You can manage your groups of patients here. Click on a group to see the complete group details and remove patients.

To create a new group, click on “Create a Group” at the bottom.

What do the stars next to the patient profile indicate?

The stars refer to Community Leadership Ratings:

A goal of our community is to share experiences and outcomes so patients can collectively better manage their disease and make decisions that affect their lives.

Towards this end, we hope that patients will work to complete the primary outcome scores for their disease, information about their diagnosis, their personal profile, and an accurate history of their symptoms and treatments.

Patients are awarded up to three stars for contributing this vital information:

Background Star — Patients earn a star by completing their profile, including their biographical and diagnosis information.

Current Star — Patients are awarded a star for keeping their treatments, symptoms, and outcomes current (3 months). Our hope is that members will work to share all prescription medications as well as significant supplements, equipment, and other interventions.

Completeness Star — It's important, both for sharing with the community and working with your clinician, to have as accurate a history of the progression of your illness as possible. Patients earn a star by providing at least four historical primary outcome (CD4 and Viral Load) data points spread evenly throughout the time since their first symptom. If the first symptom was less than a year ago, only two data points are necessary.

How do I cancel my account/remove my profile?

You can cancel your account at any time. Please email us at support@patientslikeme.com to make this request.