18 posts from October, 2011

Mental Illness Awareness Week: Stigmas, Stereotypes and Sharing

Posted October 6th, 2011 by

On Tuesday, we recognized Mental Illness Awareness Week (October 2-8) by sharing some of our mental health members’ vivid descriptions of what depression feels like. Today, we’ve taken a look at what else our members are sharing – or not sharing – about more than a dozen mental health conditions at PatientsLikeMe.

Share How You're Feeling Right Now with Instant Me

On the site, more than 80% of our active mental health members (meaning, those who have logged in during the last 60 days, n=1,589) are capturing the various factors affecting their mood and sharing those experiences with patients like them. 1,339 have posted an InstantMe update (shown above) to record their moment-to-moment status, and 843 have completed a weekly Mood Map survey.

But what about sharing in the real world – outside of PatientsLikeMe? In a poll we conducted earlier this year, we discovered that patients with a mental health condition are, along with HIV patients, the least likely to share their diagnosis with others. For instance, overall results suggest that when it comes to immediate family, 81% of respondents say “all of them” know about the diagnosis.  However, in HIV, this figure is only 50%, and in mental health conditions, it’s 56%.

February 2011 PatientsLikeMe Poll Results from 3,858 Patients with 10 Different Conditions

Interestingly, however, our poll also found that PatientsLikeMe members have shared their diagnosis with more people as a result of using the website. For mental health conditions (formerly called mood conditions at PatientsLikeMe), 28% of respondents said they had told more people about their condition as a result of PatientsLikeMe, as the graphic above illustrates. Here’s how one mental health member explains it:

“Although I have not created a large number of [forum] posts on PatientsLikeMe, just the few posts that I created gave me confidence in explaining my condition and how it has impacted my life.  PatientsLikeMe allowed me to explore others’ perceptions of their experiences. Knowing I ‘belonged’ here, and was understood here was valuable in my recovery.  So being comfortable here, at PatientsLikeMe, made me feel more comfortable discussing my diagnosis away from PatientsLikeMe.”

This, of course, speaks to the stigma surrounding mental illness, which is something Mental Illness Awareness Week aims to change. (The 2011 theme is “Changing Attitudes, Changing Lives.”) At PatientsLikeMe, we think change comes from getting to know real patients living with real mental health conditions. As one person commented on our Facebook page, “I always see people making fun of ‘crazy’ people, frivolous jokes including depression and bipolar, and movies that skew the severity, understanding and seriousness of these disorders.”

Can sharing your mental health experiences help erase the stigmas and stereotypes? The Academy Award-winning actress Glenn Close, whose sister has bipolar disorder, certainly believes so, as she writes in a great article entitled “The Stigma of Silence.” She argues that talking openly about mental illness with “more candor, more unashamed conversation” can “deconstruct and eliminate stigma.” We believe so too, but we’d love to hear your thoughts in the comments section.

What We Took Away from e-Patient Connections

Posted October 5th, 2011 by

e-Patient Connections 2011

Philadelphia, the city of brotherly love, provided the perfect backdrop for e-Patient Connections 2011, a two day summit about reaching and engaging both patients and their caregivers in the digital age.  Right away conference organizers set the tone that the patient voice should be our focus by introducing respected e-patient bloggers and advocates, such as our friend “E-Patient Dave,” and placing them in the front row of conference seating.

We were there to catch all the action and connect with both patients and those aspiring to work with them, from physicians to hospitals to pharma and health plans.  What did all these healthcare constituents have to say? Here are some of the important key points we kept hearing over and over:

  1. The winning platforms will bring together all the puzzle pieces in health. Multiple data sources (i.e., the patient voice, scientific publications, lab results, medical records, longitudinal outcomes – the list goes on and on!) give us a complete picture of a patient’s journey and status. Furthermore, many stakeholders (i.e., patients, caregivers, doctors, payors, government, industry) have a vested interest in understanding that complete picture.
  2. Real-world patient data is not a fad. Like it or not (and we happen to love it!), the patient voice is here to stay, and patients are going to continue sharing their real-world experiences everywhere. PatientsLikeMe members may be blazing this trail, but we are not alone. We were thrilled to see demos by WellApps and HealthTap, too.
  3. Having fun is key. “Game-ification” – or integrating feedback mechanisms and some friendly competition into traditionally non-game environments – is a growing social engagement tool. The best health platforms will offer participants a purpose, incentives and increasing challenges. Think of the potential applications:  for example, rewarding patients for achieving better outcomes or for using their medications as prescribed.

All in all, we came away with some great patient insights and ideas from the presentations we attended.  The resounding message from organizers: “It’s not about the conference. It’s about what you do after the conference.”  In between, we’ll be keeping tabs on our new friends’ comings and goings through the e-Patient Connections discussion group on LinkedIn.

As always, we’ve got lots of things on the “to do” list – based on your feedback and our own ideas – to make the patient experience better here at PatientsLikeMe.  Then again, we like to keep a growing list.  So what would you like to see us do?  What other “puzzles pieces” would you like to see incorporated?  We’d love to hear your thoughts in the comments section.

PatientsLikeMe member agraham PatientsLikeMe member crodarte