The Value of Openness: The PatientsLikeMe Blog

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.

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%.

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.

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.

Since 1990, the first week of October has been recognized as National Mental Illness Awareness Week by the U.S. Congress. Under the leadership of the National Alliance on Mental Illness (NAMI), mental health advocates across the country are joining together this week to sponsor numerous awareness-raising activities based on the theme of “Changing Attitudes, Changing Lives.”

Here at PatientsLikeMe, we have thousands of patients sharing their experiences with more than a dozen mental health conditions, including 7,699 patients who report major depressive disorder and 1,638 patients who report postpartum depression. What do they have to say? Below is a “word cloud” of some of the most commonly used phrases on our mental health forum. The most popular single word, by the way, is “meds.”

This graphic (which you can click to enlarge) gives you a feel of the many emotions, concerns and thoughts that surround the topic of mental health.  But the best way to increase awareness and knowledge, we believe, is to learn from real patients.  According to NAMI, one in four adults experiences a mental health problem in any given year, while one in 17 lives with a serious, chronic mental illness.

To help show what it’s like to live with depression, we thought we’d share some of our members’ candid answers to the question, “What does your depression feel like?”

• “My last depressive state felt like I was in a well with no way to get out.  I would be near the top, but oops….down I go.  I truly felt that I would not be able to pull myself out of this one.   I felt hopeless, worthless and so damn stupid, because I could not be like other people, or should say what I think are normal people.”

• “It feels like living in a glass box.  You can see the rest of the world going about life, laughing, bustling about, doing things, but they can’t see you or hear you, or touch you, or notice you at all, and you cannot remember how to do the things that they are doing, like laughing, and just being ordinary and satisfied with it.  You are totally alone although surrounded by people.”

• “It feels like walking in a dimly lit hallway (or totally black, depending on the severity) with no exit in sight and no one else around.  You keep walking hoping to come to the end, trying to feel along the walls for some sort of door that will take you out of this tunnel, but to no success.  At the beginning you feel like there has to be an end or a door of some sort - something to get you out, but as you keep walking, your hopes damper by each step.  You try yelling for help, but no one hears you.”

• “Depression is very much like feeling as if I have no arms nor legs and (what’s left of) my body is upright in the middle of a road on a cold, dark, foggy morning.  I can’t run.  I can’t walk or crawl.  In fact, I have no options.   I have no memory of how I came to be there.  I know I’m going to die, I don’t know when or exactly how.  There’s nobody around who sees me or understands my situation. If somebody gets close by and I scream, they’ll run away in fear.  My family has no idea where I am and I’m alone… except for the headlights down the road.”

Can you relate to any of these descriptions?  If you’ve battled depression, we encourage you to join our growing mental health community and connect with patients just like you.  Also, stay tuned for another blog later this week about the types of data being shared by our mental health members.

Today, October 3rd, is World MSA Day.

MSA stands for multiple system atrophy, a degenerative neurological disorder that causes symptoms similar to Parkinson’s disease. As a result, it is included in a group of diseases called “Parkinson-plus syndromes,” which have the classical symptoms of Parkinson’s (such as tremor and stiffness) as well as additional physical and mental features. In addition, these diseases typically do not respond to Parkinson’s treatments.

The theme for this year’s World MSA Day is “A Mile and a Candle.” All around the globe, MSA activists will be lighting a candle today at 8:00 p.m. local time for one hour. Participants are being asked to light a candle for each person they know who is living with MSA or has been lost to MSA. As candles are lit across every continent, a virtual 24-hour wave of light will be created as it moves from time zone to time zone.

In addition, activists will be walking a mile (or more) in honor of MSA, then reporting their mileage on the “A Mile and a Candle Counter Page.” The goal is to tally enough miles from enough participants to equal 24, 901 miles, which is the circumference of the earth at the equator. If this goal is accomplished, MSA Day supporters will have “walked around the earth” to raise awareness of this little-known disease.

Here at PatientsLikeMe, 485 patients report MSA, with 54% of them female and 46% of them male. The most common age bracket reported is 50-59 years of age, while some of the most commonly reported symptoms include excessive daytime sleepiness, sexual dysfunction, emotional lability and bladder problems. Get to know our MSA patients today and, if you can, light a candle or walk a mile in their honor.