18 posts from December, 2010

World AIDS Day 2010: Did you know…

Posted December 1st, 2010 by

Did you know today is World AIDS Day? Thanks to the many different organizations (including those like AIDS.gov) recognizing the day and raising awareness about HIV and AIDS.

Now a few years old, the PatientsLikeMe HIV community currently has more than 2,800 people with HIV sharing their health information to help others learn from their experiences. In honor of today, here’s a snapshot of what patients like you are sharing and learning about in this community.

screen-shot-2010-12-01-at-41455-pmDID YOU ALSO KNOW…

  • You can all find patients like you by searching by CD4 count, viral load, years since infection and more.
  • In a PatientsLikeMe research study published in the Journal of Medical Internet Research, we revealed:
    • 63% of HIV community members on PatientsLikeMe agreed they had better understanding of the consequences of taking a “drug holiday” after using our site
    • 23% agreed they had decided to start therapy or counseling after interacting with others on the site
    • 29% agreed PatientsLikeMe had helped them decide to start taking antiretroviral drugs
  • PatientsLikeMe research scientist Mike Massagli spoke earlier this year in a PatientsLikeMeOnCallTM podcast interview about the benefits of measuring your quality of life.  How’s your quality of life been recently?  You can measure yours too.

How are our members treating their condition?

  • Members in the HIV community are using more than 793 treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, therapies, and more.
  • The top lifestyle modifications reported by our patients includes avoiding alcohol, diet and exercise and stop smoking.
  • The most widely used antiviral drugs (or cocktails) reported by members are AtriplaTruvada and Norvir; the top 3 supplements are Multivitamins, Omega 3 Fish Oil and Vitamin C.

What are their major symptoms?

What are they talking about?

  • Some of the top topics “tagged” in our forum discussions to date include blood counts, support groups, relationships, newly diagnosed patients and side effects.

Share and Compare: How are you feeling? Find out with InstantMe!

Posted December 1st, 2010 by

Here at PatientsLikeMe we strive to give you the tools and functionalities you want and need to gain insights into your conditions, including putting your experiences in context.  Today, we’re introducing a new tool in all of our communities called “InstantMe.”  screen-shot-2010-12-01-at-91856-am1Want to chart how you’re feeling day in and day out?  Now you can.

All you need to do for InstantMe is answer this simple question – How are you feeling now?  You can answer this question as many times in a day or week as you’d like. InstantMe will appear on your profile to add more context to the other experiences you share there, as well as on your Doctor Visit Sheets so you can communicate more effectively about how treatment changes have impacted the whole you.  You can even sign up for a reminder and answer InstantMe right over email.

Why InstantMe?  Many of you already use the measurement tools we have in place to put your experiences in context  – for example, there’s the mood map, quality of life scale, or clinical rating scales (e.g., ALS functional rating scale). These instruments (which you typically fill out weekly or monthly) measure the severity and impact of medical conditions on your life.  But what about all the fluctuations that all of us experience day-to-day or even throughout one day? Maybe they’re due to our health, our treatments, or perhaps something totally unrelated, like holiday planning or work.

For a couple of years, mood community members have been using a tool called “InstantMood.”  They answer one simple question (“How would you rate your mood right now?”) and then choose an answer (“Very good,” “Good,” “Neutral,” “Bad,” or “Very bad.”)  Members can even add a short note (140 characters) to each rating to remind them what was happening at that time. It’s a popular functionality and helps members put context around changes in their overall condition.  Here are some trends members can watch with InstantMood:

Instant mood trends by day of the week Instant mood trends by time of day

What we’ve seen and heard from the Mood community is that this ability to “instantly” rate how they’re feeling is useful at both the individual and community level.  As a user, you give a little something and get instant feedback.  We like that concept.  In fact, you’ll be hearing a lot more about it in the blogs to follow this week, so stay tuned.

With this in mind, we’re excited to roll out InstantMe for all of our communities (thanks in part to what we learned from Mood).  Because we know there are more things that can influence how you feel than mood alone and we believe it’s important to have measurements that get at your whole well-being, we have changed the question slightly.

It’s a simple question, but probably one of the most important ones to ask you.  So tell us – How are you feeling now?

PatientsLikeMe member pwicks