11 posts from November, 2013

A day in the life of Social Media Specialist Jesse Smith

Posted November 25th, 2013 by

jsmithOur members give us a glimpse of their personal lives every single day when they share through their PatientsLikeMe profiles, and as the days tick down until Thanksgiving and Christmas, we’re getting into the holiday spirit by sharing a little about ourselves with you.

Jesse Smith is the Social Media Specialist on the marketing team at PatientsLikeMe, and the Boston college alum/avid chef recently sat down and answered a few questions about her PatientsLikeMe experience.

How did you first learn about PatientsLikeMe? What led you to join the marketing team?

I first learned about PatientsLikeMe when I was looking for positions in health marketing. I saw their posting for a Social Media Specialist, so I looked into the company. I was immediately impressed and excited, and started reading and watching everything I could about the company. It turned out that a fellow Boston College alum, Lori Scanlon, was the VP of Marketing and Communications, so I sent over my application to her right away. I was thrilled when I was offered the position, and couldn’t wait to get started!

Tell us a little bit about you. Rumor has it that you’re quite the cook.

I’m no Julia Child, but I certainly love to cook. Once a week, three of my friends and I get together to cook new recipes. It certainly makes things easier to have 8 hands working in the kitchen! I also love to play tennis whenever I get the chance. I need to practice as much as possible so that I can soon beat my boss, Brian Burns, who sadly took me in a 6-3, 6-2 game earlier this summer. I’m also a big BC Hockey fan, cat-lover and singer.

How do you see social media contributing to the future of medical research and PatientsLikeMe’s vision of changing healthcare, for good?

Social media is a valuable tool for moving the vision of PatientsLikeMe forward. PatientsLikeMe is committed to openness, and social media helps enhance our ability to be true to our core value of transparency and add to the collective knowledge of our social community. On Facebook, we’re able to connect with members and build a relationship that compliments the conversations happening on our site. The fast-paced world of Twitter allows us to enter into conversations with non-members, members, and industry leaders all together in real-time to get them the information they need in an easily digestible and shareable form. For example, we recently participated in a live tweet event around a Google hangout on the topic of sleep, which let all our followers and non-followers see the exciting new findings from PatientsLikeMe on stress and insomnia. That type of message would have been a lot more difficult to get across to multiple populations in the same way with more traditional marketing techniques. Social media is fun, fast and easy to use – so it’s the perfect way to connect people to each other, to us and to our mission.

What’s your favorite part about working at PatientsLikeMe?

Call it a cop-out if you will, but I can’t pick just one! I love the freedom I have in my position to be creative, the opportunity the company provides to learn anything I’d like and the ability to work with patients to advance healthcare on a daily basis. I truly appreciate that the people who work here are smart, dedicated and value a work-hard, play-hard culture. All the snacks in the kitchen and awesome places to walk to for lunch don’t hurt either!

We’ll be continuing with more “Day in the life” portraits featuring PatientsLikeMe employees from different departments, so stay tuned for more! You can also check out some of our previous entries by clicking here.


Interested in joining our engineering team and making a difference in patients’ lives? Check out our Careers page to see our current job openings.


Improving drug safety through the patient voice

Posted November 22nd, 2013 by

At PatientsLikeMe we’re interested in bringing the voice of our patients to the attention of those who make drug products and to the regulators that approve them. Since 2008 we have conducted a series of projects to collect safety information from some of our member communities. We’ve worked with our pharmaceutical partners to help them better understand the safety experiences of patients while they are using certain drug products.

I’d like to introduce you to a new acronym – P.R.O.S.P.E.R.  It stands for Patient-Reported Outcomes in Safety Event Reporting and it promotes the value of including patient experiences in monitoring the safety of drug products during clinical trials and after drugs are approved.

The PROSPER Consortium is co-led and supported by PatientsLikeMe and Pope Woodhead, a UK healthcare firm, with input from most global pharmaceutical companies, many clinical and academic groups, as well as regulators, researchers and patient advocates.

A report from the Consortium was recently published in the journal Drug Safety that provides guidance for using patient reported outcomes (PROs) for safety monitoring processes. These are just a few of the reports findings…

  • The patient perspective is an essential component of drug safety
  • Patient-centeredness and patient safety are emerging as core elements of any responsive health system
  • The potential clinical utility and value of real-world information obtained from real patients taking real drugs is great1

Although the U.S. Food and Drug Administration (FDA) has accepted safety reports from consumers for 20 years through its MedWatch program, other parts of the world only accept reports on adverse reactions to drugs from health professionals. While patient reporting has recently been encouraged there remain skeptics who doubt its value.

PatientsLikeMe is part of the PROSPER Consortium because we believe the patient voice – your voice – is essential to improving the safety of drugs and medical products. As we look ahead to 2014, we’ll be exploring opportunities to amplify your voice across all areas of health care to improve safety, starting with the FDA and the EU counterpart, the European Medicines Agency.

PatientsLikeMe member MollyCotter


1 http://link.springer.com/article/10.1007/s40264-013-0113-z/fulltext.html


NurseTogether.com partners with PatientsLikeMe

Posted November 21st, 2013 by

 

 

Media Contact
Steve Curtin
Vice President
NurseTogether.com
+1 508.494.0776
stevec@nursetogether.com

November 20, 2013, Charlotte, NC — NurseTogether.com, one of the premier online communities for nurses, today announced it has signed a marketing partnership with the patient network PatientsLikeMe to support and promote the importance of the nurse-to-patient care relationship. The websites will share content such as blog posts, articles and speeches on patient-related issues.

“The foundation of our modern healthcare system has been built on the strong relationship between the nursing community as primary caregivers and the patients they serve,” said Jenny SolCruz, Vice President of Community at NurseTogether.com. “With this agreement, we’re empowering nurses with a wealth of information and resources that will help better manage the challenges they face every day.”

PatientsLikeMe unites people living with chronic diseases and conditions online so they can track their health, learn more about disease, and connect with others. “We’re excited to help those at the very forefront of quality care learn from a wider range of patient experiences,” said Sally Okun RN, Vice President of Advocacy, Policy and Patient Safety at PatientsLikeMe. “Connecting our communities online will create a powerful resource for both nurses and patients.”

About NurseTogether.com
Based in Fort Lauderdale, Florida, NurseTogether.com is one of the fastest-growing, free online professional communities for nurses. Specializing in unique nursing lifestyle, career and professional development information, NurseTogether.com’s mission is to empower the nursing community through top-quality original content from experts, interactive web-based social media tools, and value-added services through key strategic partnerships in a variety of nursing and lifestyle disciplines.


World Parkinson’s Congress recap

Posted November 18th, 2013 by

Here at PatientsLikeMe, we always look forward to hopping on the road and visiting you, the members who generously share personal health journeys so everyone can learn to live better, together. Recently, Molly (she’s part of your Community Team), Brad and Jim (part of our Partner Marketing team) drove north to Montreal to attend the World Parkinson’s Congress with a few PatientsLikeMe members, and they wanted to take a quick second to report back on the experience. Check it out.
 


Off to MontrealThe World Parkinson’s Congress is designed to create a worldwide dialogue to expedite a treatment or cure for Parkinson’s Disease. It was amazing to see physicians and scientists, alongside health care professionals and nonprofits, connecting with patients and caregivers. It was a wonderful conference, and we were glad to be among the more than 3,300 participants who gathered in Montreal.

We couldn’t have picked a better setting than Old Montreal to meet with four of our Parkinson’s community members – Aunti_J, Sap011235, Sunshine221, and Red Hat Queen. They all attended the conference and joined us for a wonderful dinner at Chez L’Epicier. The cobblestone streets, gorgeous historic buildings and an unseasonably warm evening set the scene for exquisite French cuisine with new friends.

But the setting couldn’t hold a candle to the experience of meeting PatientsLikeMe members in person. After reading their forum posts, answering their questions, and hearing about their experiences with Parkinson’s for well over a year on the website, I was eager to give them a big hug in real life. We talked travel, DBS, support groups, community walks, and perhaps most poignantly, how and why each person joined PatientsLikeMe. Aunti_J left us with this touching memory of how she found PatientsLikeMe:

“I had to retire from my work about 2 years after I was diagnosed and I really felt like I was going home to die. I spent an entire year feeling so depressed. Then I found PatientsLikeMe and within a half an hour, I felt like this weight was lifted off my shoulders. I felt like I found ‘me’ again.”

Aunti_J joined in 2008 and continues to be a warm and welcoming voice in the community for all Parkinson’s patients who are sharing their journey at PatientsLikeMe.

The goodbyes came too quickly, the hugs were worth more than the distances we all traveled to get to them, and when we returned to our “real” communities at home, and to our virtual family on PatientsLikeMe, we carried with us the realization that we truly do live better, together.

PatientsLikeMe member MollyCotter


Uniting for World Diabetes Day and American Diabetes Month

Posted November 14th, 2013 by

unite for diabetesDiabetes is one of the most widespread conditions in the world.1 Globally, more than 370 million people are living with diabetes, including over 25 million in the United States alone.2 And throughout November, the American Diabetes Association (ADA) will raise awareness about everything diabetes, from risk factors and genetics to proper diet and blood sugar testing. The International Diabetes Federation (IDF) has also named today, November 14th, World Diabetes Day, and now is the time to start sharing your experiences with both type 1 and type 2 diabetes.

Diabetes mellitus sometimes gets lumped into a singular condition, but as you probably know, there are actually two very different kinds of diabetes, labeled type 1 and 2 (There is a third type, known as gestational diabetes that can sometimes occur during pregnancy but is not necessarily permanent). Type 2 is by far the most common, and the IDF’s website has a great infographic explaining the basics.

stop diabetes

So what’s going on this month? Both the ADA and the IDF are coordinating a ton of ways to promote diabetes awareness during November, and if you’re unsure where to begin, here are a few ideas to check out:

 

 

What’s going on at PatientsLikeMe for diabetes?

 

Just recently, nearly 600 diabetes members filled out the 17-item Diabetes Distress Scale (DDS), which measures the amount and types of problems diabetes can cause in a person’s life. Check out the complete results here.

The community also just participated in one of our very first Open Research Exchange (ORE) questionnaires. In fact, more that 700 diabetes members added their voice to it. PatientsLikeMe’s pilot research partner Dr. William Polonsky is developing the WHY STOP scale on ORE, which will help us all understand if we’re eating a meal, how do we decide we’re done. Stay tuned for more info and the complete results!

Finally, check out our interview with Dr. Richard A. Jackson, who shared some of his thoughts with us last June. He’s currently an Assistant Professor of Medicine at Harvard Medical School and also the former Director of the Hood Center for the Prevention of Childhood Diabetes at The Joslin Diabetes Center. Richard has been studying diabetes for over 30 years – he even led the first National Institutes of Health clinical trial to study diabetes prevention.

There are over 13,000 PatientsLikeMe members currently living with diabetes, and many of them have been sharing their experiences and contributing to real-world research that could benefit their fellow diabetes patients. If you’re living with type 1 or type 2 diabetes, you can find others just like you on PatientsLikeMe. Track your own experience with a personal health profile, or share your story in the community forums to start living better together, during American Diabetes Month and all year long.


1 http://www.cdc.gov/features/dsdiabetestrends/

2 http://www.idf.org/worlddiabetesday/toolkit/gp/facts-figures


Have you seen it yet?

Posted November 12th, 2013 by

We’re happy to unveil a new look and style for our website! Yesterday morning, patientslikeme.com got a makeover, and if you’ve got 60 seconds to spare, you can explore the new look with this tour. Kim Goodwin, our Vice President of User Experience, has also blogged about what’s changing and why – check it out.

As always, your voice is what matters the most, so please let us know what you think – especially if you spot anything that looks off. If you’re already a PatientsLikeMe member, you can share your thoughts in this forum thread or send your Community Team a private message. If you’re not a member, you can join here and participate in the conversation, too.

We’re excited to move forward, together. Thanks in advance for your feedback and support!


“Sleep has become a process.” Checking in with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori

Posted November 11th, 2013 by

Some of you probably remember seeing her on the PatientsLikeMe blog before. Lori is living with idiopathic pulmonary fibrosis, and when we first chatted with her last July, she shared her experiences with blogging, the difficulty in finding the right diagnosis and how connecting with others has positively impacted her life. For our “Are You Sleeping?” initiative, the PatientsLikeMe community is taking a closer look at how sleep impacts our health, but also how our health affects sleep. Check out what Lori has to say about it in our follow-up interview with her.

lori2

Don’t forget to check out Lori’s blog too, called Reality Gasps. She balances stories of her daily struggles with dashes of humor that can make anyone laugh.

How have you been doing since the last time we talked? It looks like you said on your blog that you broke an ankle?!  

I did break my ankle and had to have surgery to put in a plate and 8 screws! I had refilled the bubbler on my concentrator and didn’t realize I hadn’t screwed it back on just right. As a result, I wasn’t getting enough oxygen and when I stood up, my sats dropped quickly.  I collapsed and must have twisted my ankle, dislocating it and breaking the tibia in the process.  Surgery was quite an adventure. Because of my IPF, I can’t go under sedation, so I had a spinal and was awake for the whole thing.  I have three weeks left in the cast, and then I’ll move to a boot. I’m basically chair-bound right now, so I am eager to get mobile again!

We’ve been talking a lot about sleep on PatientsLikeMe lately. What are your sleeping problems like? Have you been officially diagnosed with insomnia?

I don’t have an official diagnosis of insomnia, but it is definitely a side-effect of my medication. I am on prednisone, which can cause insomnia at higher doses. I was just getting over an infection when I broke my ankle, so I was on a higher than usual dose of prednisone.

In addition to periodically having troubling getting to sleep, I also have periods where I wake up several times during the night because my O2 sats drop. Everyone breathes more shallowly when they sleep, and if I am having a flare or an episode, this can be a particular problem for me at night. Since changes in weather can affect my breathing, I’ve been having more trouble during the past few weeks.

When I do wake up at night, I check my sats immediately. If they’re low, I do some deep breathing to bring them up and can usually drift back off to sleep. Though, I have unintentionally started my day at 4:30 or 5:00 in the morning more than a few times!

How do you think lack of sleep impacts life with IPF? Or is it the other way around for you, that IPF affects how well you sleep. Maybe both?

I think sleep and IPF are definitely intertwined for me. To make it easier to breathe, I sleep with my head elevated. I was never a “back” sleeper, so I’ve had to get used to a whole new position. It still doesn’t quite feel “natural” to me, and it becomes one more thing to obsess about on those nights when I just can’t fall asleep. And as I’ve mentioned, medication and O2 levels affect my sleep as well.

When I can’t sleep, I get sluggish, both mentally and physically. Mental fog is especially dangerous because I need to be aware of how my body feels at all times. If I am moving and my oxygen supply cuts out or is reduced, I collapse within seconds. That’s how I broke my ankle. More directly, I notice that I cough more and my chest generally feels tighter if I am fatigued. Plus, when I am tired, it’s hard to get up the energy to keep moving. And one thing I’ve learned is that remaining active is a key factor in fighting IPF.

You mentioned that you take Ambien sometimes, but that it might not work if you’re on other medications too. Can you tell us about that? 

I take a low dose of Ambien, which usually is just enough to let me drift off to sleep. But, when I am on higher doses of prednisone, Ambien often won’t cut it. My doctor gave me a dosage range of 5-10 mg so I could adjust for those situations. But I’ve found that when I take 10 mg, I wake up feeling really groggy and that feeling lasts for several hours. I also worry about taking too much sleeping medication because I don’t want to subdue my nighttime breathing too much. I’ve started using relaxation techniques in addition to the Ambien, and this seems to be helping.

I still long for those days, though, when my bedroom was quiet (no huff-chuffing machines) and I could flip onto my belly and just snuggle down for a lovely snooze! Like everything else with my disease, sleep has become a process.


Raising awareness for epilepsy in many different ways

Posted November 7th, 2013 by

November is often seen as a month of transition – autumn gives way to winter, the holiday season fires up, and our short sleeves disappear for warm coats and sweaters. And as many of you know, November is also National Epilepsy Awareness Month. Many different organizations focus on epilepsy throughout the year, but this November, we’re all transitioning into high gear to raise even more awareness about epilepsy.

The straight facts:

  • Epilepsy currently affects 2.2 million people in the United States (and more than 60 million people worldwide)
  • The condition is the fourth most common neurological condition in the United States
  • More than 570,000 adults age 65 or older are living with epilepsy, along with 300,000 children under the age of 15 in the United States1

Thanksgiving isn’t the only important day in November

nowiknow

This whole month is dedicated to sharing experiences and learning about epilepsy, but on November 7th, the Epilepsy Foundation is teaming up with Disneyland to host the first annual “Epilepsy Awareness Day at Disneyland Resort” in southern California. Children and parents living with epilepsy will get a chance to enjoy a fun-filled, stress-free day at Disneyland, and a portion of all tickets sold will be donated to helping everyone who has epilepsy.

Over 30 organizations are teaming up to help make Epilepsy Awareness Day a reality, and the sold-out event promises to stomp out epilepsy stigmas while children have a ton of fun.

Today, the events at Disneyland are a part of a global effort to improve the lives of epilepsy patients, together, all through swapping stories and sharing knowledge.

Getting to know the Epilepsy Foundation

eflogo

The Epilepsy Foundation (EF) was established in 1967, and for over 45 years, the organization has been striving for change and working hard to assist the more than 2 million Americans living with epilepsy.

Besides the partnership on National Epilepsy Day with Disneyland, some of the EF’s innovative programs include the Jeanne A. Carpenter Epilepsy Legal Defense Fund and the H.O.P.E. (Helping Other People with Epilepsy) Mentoring Program.

Check out their website to learn more about epilepsy and what you can do to help raise awareness during National Epilepsy Awareness month.

Thanks for sharing

The members of the epilepsy community on PatientsLikeMe aren’t just raising awareness in November, they’re doing it all year long by participating in real-time research.

epilepsycommunitystats

Recently, they took part in a rescue medication study that  PatientsLikeMe and Acorda® Therapeutics partnered up on.  And on behalf of the awesome epilepsy community helping to reach our survey goal, PatientsLikeMe made a donation of $2,500 to the Epilepsy Foundation. So what did everyone say about rescue meds and epilepsy?

  • Nearly half of respondents (41%) said that in the past year, they have had multiple seizures within 24 hours despite taking daily anti-seizure medication
  • Almost half (45%) reported that they would not have access to medication that would stop a seizure
  • Three out of four respondents said they have never discussed rescue medications with their doctors
  • Check out all the results here

Phew! There really is a lot going on for Epilepsy Awareness Month. Not sure where to start? You can…

There are more than 8,000 members of our epilepsy community – all are raising awareness by sharing their real-world experiences through research, surveys and the community forums. The topic could be anything from seizures to epilepsy treatment newsadd your voice and join the conversation today.

Letitia’s story and the patient voice

Say hi to Letitia. She’s been living with epilepsy since she was 10 years old, and she’s been a PatientsLikeMe member for over three years. As we all share our stories to help raise awareness, check out what she has to say in this video about how the members at PatientsLikeMe changed her life.

“I feel like PatientsLikeMe changed my life because it gave me a lot of the answers that I’ve been searching for all of these years…without PatientsLikeMe I probably would have never found out about an epileptologist.”


1http://www.epilepsyfoundation.org/aboutepilepsy/


Stress and sleep- PatientsLikeMe co-founder Jamie Heywood’s interview on the TEDMED blog

Posted November 6th, 2013 by

jamie13

Our co-founder Jamie Heywood was just interviewed for the TEDMED blog. Check it out! He talks more about the recent PatientsLikeMe sleep survey and some new results that show how stress can impact our sleeping habits.

 

 

 

Here’s what’s posted up on the TEDMED blog…

A new survey suggests patients’ sleep problems often go untreated

Most people with a health condition have a hard time sleeping well.  And one of the overwhelming reasons why sleep is difficult?  They’re stressed.

So say the results of a recent survey of more than 5,200 patients by the online network PatientsLikeMe. The findings make sense, right?  Yet the issue of sleep deprivation can be hard to spot and quantify among patients already suffering from other ills. Its causes are complex and varied, including factors like anxiety, pain and depression. And our specialty-centric medical system makes it difficult to design a comprehensive treatment.

PatientsLikeMe has been studying sleep issues for more than five years now, amassing patient-specific sleep data representing the experiences of 65,000 patients.  The recent survey revealed that most respondents – 64% – say they think they have a sleep problem, with over half saying they’d suffered for a year or more.

“While a common factor among the chronically ill, sleep problems are not generally on the clinical visit menu, even in questions where sleep is really critical like epilepsy,”  says Jamie Heywood, PatientsLikeMe’s co-founder and chairman and a TEDMED 2009 speaker. “There are a lot of things we think we know in medicine, but they aren’t measured in any way that allows you to do comparisons.”

Looking at multifaceted factors among a large population is one of the biggest challenges in medicine, he adds.

“Medicine stores data in largely a storytelling or narrative format, so when you talk to an endocrinologist, for example, and you ask them if their patients have sleep problems, they say a lot of them do. But they would not be able to say quantitatively how many do, or if there are treatments that are more or less effective for that population.

“We built PatientsLikeMe to advance understanding of the many variables of health across conditions” Heywood says. “Because we run these cross-condition studies, we can create much greater value than the current silo-based model creates.”

 

Stress Contributes to Sleep Problems, Makes Normal Functions Difficult

Stress was reported as one of the biggest sleep loss factors – again, a likely outcome but one with a surprising impact.  Of survey respondents who reported sleep problems of at least mild severity, 89% of women and 84% of men said their sleeping problems are caused by stress or anxiety.  And those with stress-induced sleeping problems reported that it had a significant impact on their ability to work.  (Click here for the data.)

The study aimed to measure sleep quality against the holistic backdrop of a patient’s life environment, such as work and living conditions. Going forward, PatientsLikeMe also plans to look more closely at data relating insomnia to chronic fatigue, depression, pain, and diet, and to delve into nuances such as a patient’s feelings of empowerment and how it may relate to his or her symptoms.

“These are important variables about how people live with disease,” Heywood says.  “Every one of these is a complicated sub-domain where understanding the compounding factors and context is extremely important. For us to move into this next generation of personalized medicine, we first have to understand mathematically what the human condition is.”

PatientsLikeMe also launched the Open Research Exchange this summer, an online platform to help researchers design, test and share new ways to measure diseases and health issues, and to open the research process to patient input, including developing and critiquing questions.

A traditional research model with a principal investigator collecting subjects and restricting access leads to conditions without good outcome measures, particularly those for rare diseases, Heywood says. Instead, Open Research Exchange uses crowd-sourcing concepts to help researchers develop new health outcome measures and more fully understand diseases in a patient-centered way.

“Look at the BECK Depression Inventory – that was developed in just over a week.  The idea that our whole understanding of depression is based on something that was developed in a week without patient input, and hasn’t evolved since, is just wrong. We have patients tell us all the time how to make our scales better, and now we’re going to give them the ability to do it,” Heywood says.

Jamie Heywood will be a participant at this week’s live online Google+ Hangout, discussing the causes and effects of sleep deprivation. It’s tomorrow at 2PM Eastern. Click here for more information and to register.


A Live Online Event: The extended effects of sleep deprivation

Posted November 4th, 2013 by

Recently, PatientsLikeMe co-founder Jamie Heywood and the member community were featured on TEDMED’s blog, and we’re happy to share the post with you this morning. In case you didn’t know, TEDMED is a “multi-disciplinary community of innovators and leaders who share a common determination to create a better future in health and medicine.” (Check out their website here.) Coming up this Thursday, Jamie is going to be part of a live online conversation, talking about chronic illness and it’s impact on sleep. It’s a free event that anyone can join, so we hope to see you there.

Here’s what’s featured on TEDMED’s blog:

The more we know about the physiological effects of sleep deprivation, the less we seem to know about its prevalence, diagnosis and effects on our well being.

The online network PatientsLikeMe recently conducted a survey of more than 5,200 members — people with life-changing health conditions — about sleep, which revealed that most respondents think they have a sleep problem, and have suffered for a year or more.

In fact, a quarter of those said that they rarely get a good night’s sleep. Yet only a small percentage had actually been diagnosed with insomnia. The effects of sleep deprivation, meanwhile, affected their emotional well-being and relationships, and led to dangerous behavior when driving.

Why would sleep loss in what would seem to be an obviously affected population — the chronically ill — go under-diagnosed, and how much do their conditions affect their sleep, and vice versa? What factors are to blame for their sleep loss, and how can we better quantify and treat an issue with such complex causes? Join our live online conversation this Thursday at 2pm ET to discuss the issue and to hear more surprising results from the PatientsLikeMe survey. Our special guest is James Heywood, PatientsLikeMe’s co-founder and director.


Uncovering psoriasis with patients like you

Posted November 1st, 2013 by

World PSO Day

This is it, the last report in our 5-part series of seasonal surveys focused on uncovering the experiences our psoriasis members. Like the seasons before it, this summer more than 300 psoriasis community members added their voices to research to help everyone understand what it’s like to live with the condition. Thanks to everyone who shared their experiences and helped uncover a little more.

Here’s a sneak peek:

Summer facts
What do we know about those who took part this summer? The average age of those who answered this survey was 48, and 70 percent of respondents were women. These people also told us about what activities they prefer. A majority of members enjoy swimming in the summer, and out of the swimmers, more preferred the pool (39%) than the ocean (35%). And when it came to clothing choices, we learned that the majority of you (70%) are actually fine with ‘uncovering’ a little skin, choosing to wear T-shirts and shorts versus long sleeves and pants.

Uncovering Psoriasis

You can check out the full results by downloading this report — Patient Voice: Uncovering Psoriasis (Summer 2013). You’ll find in-depth look at how our members with psoriasis rated their “skinpact1” this summer along with what specific factors can increase it, from age to the location of an outbreak to the percentage of the body covered with itchy, red plaques (a measurement known as the Body Surface Area or BSA score).

Interested in other seasonal psoriasis insights? Here’s a recap of the other seasonal reports, made possible by the experiences that PatientsLikeMe members have shared over the past year:

Want to connect and learn from psoriasis patients like you?


1 The Dermatology Life Quality Index (DLQI) is used to measure the “skinpact” that psoriasis can have on patients. It asks questions like “How self-conscious are you because of your skin”, “How much has psoriasis interfered with your personal activities”, or “Does your skin condition affect your ability to do sports?” The questionnaire runs from a low score of 0 (no impact) to a maximum of 30 (extremely large impact).