patient voice

TEDMED 2013: Creating and experiencing wow!

One word comes to mind when describing my recent experience at TEDMED 2013 – WOW!  Held annually at the Kennedy Center in Washington D.C., TEDMED is a conference unlike any other. For 3 ½ days you are immersed in the ideas and creativity of people from around the world who bring diverse perspectives to some of our greatest challenges in healthcare. For me it was especially awesome because I contributed to the ‘wowness.’ I had the privilege of being a TEDMED 2013 speaker – in fact, I was the first nurse to ever take the TEDMED stage. My talk addressed the question “Does anyone in healthcare want to be understood?” At first glance the answer to this question seems obvious – “yes, of course we all want to be understood.” However, if you consider how many words used in healthcare are Latin or Greek, insider jargon or acronyms, the answer is not so obvious after all. I reminded the audience that the language of health is missing the words and experiences of those we say are at the center of healthcare – patients. It’s time to move beyond the rhetoric of patient-centeredness to actually include the lexicon of patients in …

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Psoriasis in winter: what we’ve learned

The winter months can mean dry air, less sunlight, indoor heating, and heavy clothing – not the best conditions for people living with psoriasis. As part of our continuing seasonal series, we conducted a survey of our psoriasis community between October and March, receiving responses from over 500 patients. We asked everything from, “How does the way you dress for winter affect your psoriasis?” to “Does getting the sniffles or the flue impact your condition?” Members in more than 15 countries responded, signaling our survey is really starting to go global! The average age of those who responded was 45, with 70% women and 30% men. In response to whether or not getting sick had an effect on their psoriasis, most people (40%) said that it had an effect, 33% said it affected their psoriasis “a little”, while 27% said it had no effect. To share what we learned, we’ve put together a new Patient Voice report entitled Uncovering Psoriasis. Don’t miss this in-depth look at how our psoriasis patients rated their “skinpact” this fall 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, …

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TWO OUT OF THREE PATIENTS REPORT DISCONTINUING TYSABRI WITHOUT DOCTORS’ ADVICE

FOR IMMEDIATE RELEASE TWO OUT OF THREE PATIENTS REPORT DISCONTINUING TYSABRI WITHOUT DOCTORS’ ADVICE PatientsLikeMe Releases First in Series of Reports on Real-World Patient Experiences with Top Multiple Sclerosis Drugs CAMBRIDGE, Mass. — September 22, 2011 — In the first report of a series on Multiple Sclerosis (MS) disease modifying therapies(DMTs), PatientsLikeMe reveals that nearly two-thirds (64%) of patients who report discontinuing the use of Tysabri (n=323) did not cite “doctor’s advice” as a reason. “Side effects too severe” and “did not seem to work” topped the other reasons cited by patients. The report goes on to reveal that patients stop Tysabri due to side effect severity less frequently than patients who discontinue other DMTs for that same reason.  The PatientsLikeMe report is the first of five in a series focusing on how patients are experiencing and evaluating DMTs in the real world. “People with MS and other conditions have become much more than just consumers of prescription medications, they are now customers who wield a high level of influence on treatment decisions,” says David S. Williams III, Chief Marketing Officer at PatientsLikeMe. “The goal is maximizing health outcomes for patients.  Clinicians can use the real-world insights from this report to collaborate better …

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PatientsLikeMeOnCall™: “A Look Ahead” at Openness in Healthcare (Episode 4)

“I think we can see there are a lot of ways where openness can be powerful.  What’s necessary is to help facilitate openness and reduce the barriers to sharing medical information.” – Ben Heywood PatientsLikeMe Co-Founder Ben Heywood has blogged previously about openness and sharing – and how important they are for patients. In this edition of PatientsLikeMeOnCall, he talks about the progress we’ve made in achieving openness within the healthcare industry and his vision for the expansion of the patient voice. How can we put patients back at the center of healthcare? What barriers do we need to break through so that patients like you can openly share your health information?  Ben answers these questions and more in the fourth and final episode of our “A Look Ahead” podcast series. Tune in to Ben’s full interview here: Podcast Powered By Podbean Did you miss any of the first three episodes?  Find them on our blog or iTunes page.

Treat Us Right: Mapping What Patients Think About Medications

One of the ways we can better understand whether you, as patients, are having a positive or negative treatment experience is to “listen” to the conversation you’re having in our forum.  By understanding whether you are having a positive, negative, or neutral experience with a particular treatment you are taking or are considering taking, we can measure the impact of different events on the overall community. For example, in 2008 we measured the impact on our multiple sclerosis community of a corporate announcement by Biogen about a serious and sometimes fatal side effect of Tysabri (occurs in about 1 in 1000 patients).  The results revealed that patients were indeed frightened by the announcement, but these patients were also so positive about Tysabri’s benefits, that most planned to continue taking the medication regardless of the risk. Visualizing Perception of Sentiment We visualize movement in your sentiment via perceptual maps and longitudinal bar charts.  The perceptual map here shows how patient perception (indicated via forum conversations in one disease community) is moving regarding different medications over four periods of time. (Note: each color represents one medication;  the shading represents the change of perception over time with the darkest shade being most recent).  …

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Share and Compare: From the mouths of patients

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. – – – “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 …

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Epilepsy Awareness Month: The Beauty and The Turbulence

Did you know November is Epilepsy Awareness Month? In honor of the month and to help raise awareness of epilepsy, here is the first in a series of blogs about our Epilepsy Community members’ experiences with this disease. To kick us off, let’s meet tonialpha, a three-star member and PRO who recently sat down with us to give the following interview in our monthly newsletter. Read on to hear more about how tonialpha maintains perspective, passes the time and learns from PatientsLikeMe. * * * (Amy) What are you most proud of? (tonialpha) I am most proud of life. Life is environment. It is inside and out! We see the beauty and the turbulence. It is how we see it and take it. (Amy) How do you maintain perspective? (tonialpha) I need to review, review, review, review! My perspective of things sometimes leaves me due to stress, letting things overbear my thoughts and mutter my mind. I need to step back, take a walk or go in the bathroom and read, call a friend, text a friend or look in the dictionary when I am confused. Taking a walk outside helps me, when I am alone and can rationalize. (Amy) …

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The Patient Voice | Episode 4: Weaving An Inheritance

“I’ve had Parkinson’s for 15 years, and I feel like I can help people more by being vocal than I can by being quiet.” -Aunti J Stand up and shout! Episode four of our new podcast series, “The Patient Voice,” is here!  For our next interviewee, meet Aunti J.  Like many others who contributed to the quilt, Aunti J wasfeatured in her local newspaper. She was proud to be raising awareness of Parkinson’s disease (PD) on behalf of all those represented through their patches on the PatientsLikeMe PD community quilt. Aunti J inherited her PD and has been living with it for most of her adult life.  While she has plenty of first-hand experiences with PD, she has also been a caregiver for someone with the disease – her father.  A wealth of knowledge with a big heart, Aunti J makes it a point to share as much as she can about what she has learned. When her father passed away, she came online looking for support and an opportunity to share with others.  The PatientsLikeMe PD community is thrilled that she found us! With more than 200 patients with inherited PD on PatientsLikeMe, Aunti J was able to find …

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Mental Health Awareness: What do you know about Mood Conditions?

In honor of this month’s Mental Illness Awareness Week, here’s a snapshot of what’s happening in our PatientsLikeMe Mood community. Launched in 2008, the community now has more than 18,000 patients. Below are some interesting facts about the community, so please read and share on! DID YOU ALSO KNOW… You can search for patients under 15+ diagnosis categories, including depression, bipolar, obsessive-compulsive disorder (OCD), post-traumatic stress disorder (PTSD), anxiety, addiction to tobacco, addiction to alcohol, eating disorder and more. In a PatientsLikeMe research study recently published in the Journal of Medical Internet Research, we revealed: 26% of responding mood community members agreed or strongly agreed that using the site had reduced thoughts about self harm 23% agreed they had decided to start therapy or counseling after interacting with others on the site 22% agreed they needed less inpatient care as a result of using PatientsLikeMe.  (See our “Patient Voice” report, video and member interview on inpatient therapy). Members’ experiences on the treatment Amitriptyline was used in an award-winning paper presented at Medicine 2.0 last year. How are our members treating their condition? Patients are using more than 1700 treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, therapies, and more. The …

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The Patient Voice – Loud and Clear

We are excited to present the first member video for the PatientsLikeMe Mood community and what better way to kick it off than with one that represents the voice of the patient. In June, we launched The Patient Voice with the inaugural report on inpatient therapy, a topic often discussed by our Mood community members.  At the time of the report, 63% of patients on our site reported an efficacy of “moderate” or “major” for inpatient therapy. Many patients have already benefited from the information in the report, so we decided to create a video that highlights our patient members’ tips and experiences. Check it out on our YouTube or Facebook page, but if you visit the latter don’t forget to become our fan! If you want to know more about patients’ experiences with inpatient therapy, you can download the full report here. It includes even more tips and personal stories, interesting facts about the PatientsLikeMe community and a worksheet that will help you make the most out of your hospital stay. Of course, none of this would have been possible if patients like you were not willing to share. We are always eager to hear what you have to …

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