The Value of Openness: The PatientsLikeMe Blog

As we round out our “Share and Compare” week, here are a few quotes that some of our members have shared regarding the impact of being able to see where you fit in.

You’ll read in the quotes how patients like you can find solace in the fact that there are others out there experiencing the same thing;  you’ll see how your sharing is helping others make sense of their treatment dosages; and you’ll feel through these quotes how personal sharing can be within a community like ours.  Behind all the graphs and charts we’ve shared this week are people - here’s what they have to say.

Stay tuned next week for a few follow-up pieces on Share and Compare, as well as a new topic series.  Have you learned from sharing and comparing?  Add a comment below, post in the forum or connect with us through private message inside the site.

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“It’s so nice to share information with others who are experiencing the same thing. The most frustrating thing I remember as a teenager was when doctors couldn’t explain exactly what was happening to me or why. I used to feel as if I did something wrong and that’s why I was ‘different’. The more information we can share with each other, the better.”
- Epilepsy community member

“I feel like a breath of fresh air of hope; just knowing I’m not alone and there are others who experience side effects, have good and bad days even experience combination seizures.”
- Epilepsy community member

“[It] really puts my mind at ease and sounds like my [treatment] dosage is not that unusual this soon after my transplant. I look forward to eventually taking it down.”
- Transplant community member

“I am so thankful [to have] found this site…where I can, after a fashion, talk and identify with others on the PD bus. We understand. We are similarly bound.”
- Parkinson’s community member

“…just being able to see so many people that are going through the same thing I am (literally sorted by [treatment] and [diagnosis]) - makes it feel just a little bit more in control for me.”
- Fibromyalgia community member

“I want to know if what I’m going through is normal for a patient like me.” This is a sentiment we’ve heard from so many of you throughout our communities.  This week, we’re focusing our blog on some of the ways we’re trying to help you put your experiences in context.  It’s a concept we like to call “share and compare.”

From a design standpoint, we’ve been focusing on how to help you see how your status relates to other patients with the same condition.  By showing where you fit within a larger group, you can begin to see if your experiences are typical.  The more data you share, the more you can compare your experience to others.

Here are some of the changes we’ve made this year along these lines, as well as the benefits to patients like you:

1. Treatment pages: Now you can view the most commonly prescribed treatments for your condition and see where you fit in with the treatments you’re taking.  Want to see if the dosage you’re on is in line with others?  Now, you can.  (You can also use this to discuss dosage questions with your doctor)



2. Individual treatment reports: When you view a report for an individual treatment, you can get some additional context, including how your reasons taken, side effects and dosages relate to those reported by other patients.  Again, it’s a great way to see if your side effects or dosages are typical, and then use this information in your discussions with your healthcare team.



3. Condition history: When you answer questions in the condition history section of your profile, you can now see how you compare to the larger community based those items, including diagnosis status, age at diagnosis, condition type, family history and more.  Are there a lot of other newly diagnosed patients like you?  Maybe there are a lot more people with many years of experience with your condition to whom you can reach out to for support.  All of this data helps you compare your experiences with those of the larger community.

Over the next few days, we’ll continue to highlight how patients like you are putting their experiences in context and what value they’re getting from being able to compare it with others.  Sign up for an email alert of new blogs or just stay tuned right here!

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.

DID 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 PatientsLikeMeOnCall^TM 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 Atripla, Truvada and Norvir; the top 3 supplements are Multivitamins, Omega 3 Fish Oil and Vitamin C.

What are their major symptoms?

• The 5 most common primary symptoms reported include: Chills/Fever, decreased appetite, night sweats, skin problems and swollen glands.

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.

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.”  Want 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:

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?