MONTHLY MUSINGS

Can patients influence how medical research is conducted?

Back in March, our Research Director Paul Wicks was asked to speak at the Psychiatry Grand Rounds Conference at the University of Massachusetts Medical School.

It was a great opportunity to talk about our growing Mood Conditions Community – now with 16,000+ members and counting – and demonstrate how patients like you can take control of your condition by sharing and learning with other patients.  He also focused on how PatientsLikeMe can bring the patient voice into research – quickly and powerfully.   

Fortunately, it was all caught on camera.  Click here to watch Paul’s speech on YouTube and leave your comments about the future of psychiatric research.  Do you see yourself playing a role?

--Aaron Fleishman, Community Manager

JOIN THE CONVERSATION

Check out some of the hot topics in the forum.  Then jump in with your own questions and answers!

Dealing with tinnitus
Have you experienced tinnitus – or ringing in the ears?  Other patients like you have.  Weigh in with your stories as well as what remedies you’ve tried.

What made you happy today?
Got your errands done?  Made a delicious dinner?  Hugged your grandkids?  Share the big and little things that lifted your mood in this infectious thread. 

The question psychiatrists and therapists always ask
Have you been asked, “Where do you see yourself in X years?”  You’re not alone.  Are you able to envision the future, or do you struggle to answer this question?  Chime in.

GETTING TO KNOW YOU

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.”  That’s why we interview patients each month to find out more about how they approach life.  This month we are pleased to feature ashlaz84, a three-star member from Illinois.

1.  What has changed recently for you?

I find keeping track of my moods has helped me to recognize a pattern in my behaviors, and helps me recognize the cycles of stress I go through as well.

2.  How would you describe your “life philosophy”?

Take everything one day at a time. And keep track of what moods you are in, what you are doing, when you feel angry, or happy, or just in the moment. I find it helps me to maintain sanity sometimes, just having a moment to write about my day.

3.  What’s the most unexpected thing about your condition?

The emotional swings, the unexpected feelings of anger, or sadness, or almost unbearable joy. It’s the intensity of these emotions as I experience them.  It can really overwhelm and exhaust me sometimes.

4.  How much time do you spend at PatientsLikeMe?

I log in everyday and update my moods daily. I try to check everything and note my feelings every week, but I sometimes lapse due to depression. But I always try to keep track of how I am doing every month.

WHAT’S NEW AT PATIENTSLIKEME

• "Transparency, Openness and Privacy.”  These are words you hear often at PatientsLikeMe due to our open sharing concept.  They were also the subject of a recent private message to our members as well as a blog post from our President and Co-Founder Ben Heywood.  What are the privacy implications of openness?  How does PatientsLikeMe make money?  How is your identity protected?  Read what Ben had to say and join the discussion today.

• Your answers to last year's user survey have been published in the Journal of Medical Internet Research (JMIR)!  Entitled “Sharing Health Data for Better Outcomes on PatientsLikeMe,” the original research paper reveals the benefits many of you have reported from using the site.  Did you know 22% of Mood survey respondents agreed you needed less inpatient care as a result of using PatientsLikeMe?  Check out Research Director Paul Wicks’  blog entry and podcast about the results – and read the paper in full here.

• When it comes to Internet culture and online health information, PatientsLikeMe remains at the forefront of the national dialogue.  This month, the Wall Street Journal cited PatientsLikeMe as a shining example in their investigation entitled “Does the Internet Make You Smarter?”  And at the end of May, the New York Times examined our business model and looked at how PatientsLikeMe is helping to create a new culture of empowered “e-patients.” 

• Launched just three months ago, our new Organ Transplants Community already has over 1,600 patient members – almost 300 of whom are three-star members.  In addition to heart, lung, kidney and liver transplant recipients, the Organ Transplants Community now supports pancreas transplant recipients as well.  If you know anyone who has had or is anticipating a transplant,  invite him or her to join PatientsLikeMe today. 

THIS MONTH’S SITE IMPROVEMENTS

We are constantly working to improve our site.  In this section, we’ll keep you up-to-date on new tools and features designed to make your PatientsLikeMe experience even better. 

Here are our top functionality enhancements for June:

• Notice anything new on your profile?  We’ve added some handy Flash charts that make your profile data easier to read and understand.  Want to see what treatment someone is taking during a specific timeframe?  Just slide the arrows on the chart to instantly narrow your view.  Learn more here.

• Are you typo-prone?  Have no fear.  We have added spell checking to the forum so that you can spend more time sharing and less time re-reading.  Currently, this new feature is supported in Firefox, Chrome, Safari and Opera browsers.  Look for a broken red line underneath any suspected misspellings.  Not sure what the correct spelling is?   “Right click” with your mouse, and you’ll see suggested spellings as well as an option to add unrecognized words to your dictionary.

• Everyone likes a little feedback.  Well, here you go!  Now, when you enter or update your Basic Information on your profile, you’ll instantly see how you compare to the rest of the community in regards to age, gender and location. 

• Have you seen a small pill icon in the forum recently?  This is a new feature that automatically links the first occurrence of a treatment (prescription, OTC or supplement) in a forum post to the corresponding Treatment Report.  Click through to find out how many members have taken the treatment and what they’ve reported about efficacy, side effects, dosages, cost and more. 

• Since we don’t have a loudspeaker that reaches all of you, we’ve added a way to make important sitewide announcements.  Now, if the site is going to be down for maintenance for a short while, or there’s something everyone needs to know, you’ll see a big, impossible-to-miss yellow banner at the top of any page.