8 posts tagged “share”

PatientsLikeMe Encourages Sharing of Health Data for Good with 2nd Annual “24 Days of Giving”

Posted December 1st, 2015 by

The Gift of Health Data Can Help Others, and Advance Research

CAMBRIDGE, MASS., December 1, 2015—On this #GivingTuesday, PatientsLikeMe is once again celebrating “the new tradition of generosity” by encouraging people to donate something unusual but vital: their health data. Starting today and continuing for #24DaysofGiving, PatientsLikeMe is asking anyone who is living with a chronic condition to donate their health data after donating to their favorite non-profit.

PatientsLikeMe is a patient network that aggregates the health data members share so that others can see what’s working for patients like them, and what’s not. Health data includes information about a disease or condition—how people live with it, what their doctors are doing to treat it, and what it’s like to navigate their health journey. PatientsLikeMe also analyzes the donated data to spot trends in specific diseases and works with partners to incorporate patient-reported evidence in their research. Partners can then create new products and services that are more in tune with what patients experience and need.

Michael Evers, Executive Vice President of PatientsLikeMe’s Consumer and Technology Group, said that members donated a record amount of health data last year, the first time the campaign was introduced. “Tens of thousands of new and existing members answered the call by contributing treatment evaluations, symptom reports and other health updates. But they didn’t stop on the first day of giving. They shared their data over the course of the entire month, and continued to do so this year. I hope others will join us again so that everyone has the best information to make decisions, and we can continue to bring real-world perspectives to research.”

PatientsLikeMe plans to give back in several ways during the campaign. While it returns study results back to participants as quickly as possible, the company will once again showcase some of the most important research that has benefited from patient data in the last year and beyond. It’s also making a donation of up to $20,000 to Make-A-Wish Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

Members use PatientsLikeMe for a range of reasons. For some, tracking their condition is the most vital. Allison talks in this video about living with bipolar II, and how she uses PatientsLikeMe to track her moods. “I haven’t had any episodes in the last five years because I have the data to link all the pieces together. I’m prepared because of PatientsLikeMe.”

Gus, who was recently diagnosed with amyotrophic lateral sclerosis (ALS), contributes his data to make sure others like him have a game plan for living with the condition. “The person who has just been diagnosed isn’t thinking about anything else. Their head is spinning. I want to create a manual so that others can understand what’s working for me and anyone else living with ALS, and make educated decisions to improve their quality of life.“

“24 Days of Giving” will be active across PatientsLikeMe’s Twitter and Facebook social media channels through December (#24DaysofGiving). Anyone who is living with a chronic condition can create a profile on PatientsLikeMe and start tracking their symptoms, treatments and quality of life. Existing members are encouraged to keep their profiles up-to-date or complete a new treatment evaluation. To learn more, go to www.patientslikeme.com.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and non-profits develop more effective products, services, and care. With more than 380,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 70 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


Results From PatientsLikeMe Survey Highlight Patient Beliefs About Medical Marijuana

Posted July 14th, 2015 by

Cambridge, MA, July 14, 2015—A new survey of 219 PatientsLikeMe members has found that patients with certain conditions who use medical marijuana believe it is the best available treatment for them, with fewer side effects than other options and few risks. The survey, conducted in June 2015, is among the first to gauge patient perceptions about the benefits and risks of medical marijuana and their level of willingness to recommend its use.

PatientsLikeMe’s Vice President for Advocacy, Policy, and Patient Safety, Sally Okun, RN said that while the number of respondents and conditions represented is limited, the survey and its results come at an important time. “As more people consider using medical marijuana, and more states legalize it, patients need to know what others are experiencing. This survey starts to gather real world data about marijuana as medicine—information that may be useful for patients and their physicians as they explore options and make treatment decisions.”

Half of the survey respondents started using medical marijuana in the last five years, while 25% started to do so in the last two years. Smoking (71%), edibles (55%), and vaporizing (49%) were the most commonly used methods for taking the treatment. The top three conditions represented were multiple sclerosis, fibromyalgia and depression. Key findings are as follows:

Usage and Perceived Side Effects

  • About three quarters (74%) of survey respondents agree that medical marijuana is the best treatment available for their health issue. Another 20% are unsure if there is another option available.
  • 76% report that they use medical marijuana because other treatments weren’t working and/or caused too many side effects. About 21% use it to avoid the side effects of other treatments.
  • When asked about the severity of side effects from using marijuana, 86% of PatientsLikeMe members who report using marijuana indicate the side effects are either “none” or “mild.” The same group says those side effects include dry mouth, increased appetite, and sleepiness.

Perceived Benefits and Risks

  • Survey respondents use medical marijuana for more than one reason, including to treat pain (75%), muscle stiffness or spasms (69%), insomnia (67%) and anxiety (55%). The majority (63%) considered marijuana as a treatment option because they think it is more natural.
  • Most (93%) say that they would recommend medical marijuana to another patient.
  • About 61% say their healthcare provider is supportive of their medical marijuana use, and 60% have a letter of recommendation or prescription.
  • Most patients report a low level of concern (“Not at all” or “A little”) with long-term health risks, such as developing lung cancer (89%), long-term lung damage (86%), or becoming addicted/dependent (96%).
  • One in four patients (26%) report being “Somewhat” or “Very” concerned with legal problems.

Infographics on these and other survey results and the complete list of questions and responses are available at http://news.patientslikeme.com.

David Casarett, M.D., a professor at the University of Pennsylvania’s Perelman School of Medicine and the author of the newly-released book STONED: A Doctor’s Case For Medical Marijuana, worked with PatientsLikeMe on the survey. “This is an important first step in crowdsourced science about medical marijuana. Until we have a lot more large, high-quality clinical trials, patients will need to rely on each other to learn about whether and how medical marijuana might help them.”

Medical marijuana refers to the use of the cannabis plant as well as synthetic THC and cannabinoids as medicine. It is legal in Canada, Belgium, Australia, the Netherlands, the United Kingdom, Spain, and in some U.S. states.

Survey Methodology
Between May 26 and June 10, 2015, PatientsLikeMe invited 1,288 members who added medical marijuana to their profile to respond to the survey; 219 completed it. The mean age of the respondents was 49 years (SD: 12.2); the age range was 19 – 84 years. Most respondents (81%) reported their location as the United States, while 13% are from Canada and the rest are from Australia, Europe, South Africa or Israel. Four respondents did not report their location.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 350,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


Throwback Thursday: Are you sleeping?

Posted July 9th, 2015 by

It’s time for another Throwback Thursday, and today, we’re rewinding back to the summer of 2013, when the staff at PatientsLikeMe shared about how they sleep. Sixty one employees helped kick off the “Are you sleeping?” campaign in a quick poll, answering questions about how long and how well they sleep each night. Check out the highlights below:

How well are you sleeping?
All in all, we found that the majority (89%) of our staffers were sleeping OK or better.

How well are you sleeping?

 

On average, how much sleep do you get every night?
Although our Zzzz’s were OK, 61% of respondents were only getting between 5-7 hours a night (and according the Center for Disease Control and Prevention, that’s way less than the recommended 7-8 hours for adults).

How many hours?

 

Do you have a problem…
For those who confessed to having sleep troubles, more people said it’s staying asleep that was the issue (77%).

sleep problems

 

What have you tried to help you fall asleep?
When it came to needing sleep aids to catch Zzzz’s, more of our employees turned to solutions like books (60%), lifestyle changes (50%), TV (31%), relaxation (31%) and sex (33%). Some tried over-the-counter interventions (22%), prescriptions (16%) and homeopathic techniques (14%). We also asked what was least helpful, and found ‘watching TV’ topped that list.

Tried to fall asleep

 

Since joining the PatientsLikeMe team, do you…
And last but not least, since joining the PatientsLikeMe team, only a handful had changes in their sleep, with 13 people saying they slept less (23%), and surprisingly, 5 (8%) actually slept more.

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If you’ve been struggling with sleep, read what PatientsLikeMe members Lori (living with idiopathic pulmonary fibrosis) and Marcia (living with multiple sclerosis) had to say about their insomnia. And don’t forget to reach out to the community in the Sleep Issues forum on PatientsLikeMe – over 40,000 members are sharing about everything related to their sleep.

Share this post on Twitter and help spread the word for sleep and insomnia.


Let the world know about pulmonary fibrosis

Posted September 7th, 2014 by

On Rare Disease Day back in February 2013, we announced our partnership with Boehringer Ingelheim to help enhance the online idiopathic pulmonary fibrosis (IPF) community. And by September 7th that same year, the community had grown to just over 1,000 people. Today, on the next edition of Global Pulmonary Fibrosis Awareness Day, the community stands 2,500+ members strong, making it the largest online gathering of IPF patients anywhere in the world. In just a year, the community has almost tripled in size, and everyone is sharing about their experiences so that other patients, doctors and researchers can learn more about life with IPF.

But what exactly is IPF? Pulmonary fibrosis (PF) is a medical condition that causes lung tissue to thicken, stiffen and scar over a period of time, and “idiopathic” means “no known cause.” According to the Coalition for Pulmonary Fibrosis, there are over 100,000 Americans living with IPF at any given time, and an estimated 40,000 will die from the condition every year. And besides a complete lung transplant, there is no known cure for IPF.1

Today, the Pulmonary Fibrosis Foundation (PFF) is encouraging everyone to educate, share, fundraise and start conversations about IPF. You can learn more about how to get involved through the PFF’s toolkit and guidelines for September.  And if you or someone you know has been diagnosed with IPF, join the community at PatientsLikeMe – let’s change who knows about this condition and promote a better understanding of IPF all year round.

Share this post on twitter and help spread the word for pulmonary fibrosis awareness.


1 http://www.coalitionforpf.org/facts-about-idiopathic-pulmonary-fibrosis/


One for All: Ways You Can Share, Find and Learn at PatientsLikeMe

Posted March 11th, 2011 by

When patients join our site, a common question we get is, “Now that I’ve signed up, what can I do here?” One answer is that you can chart the real-world course of your disease and compare it against other patients. But that sounds a little complex, doesn’t it?

If we break it down into simpler terms, we are really talking about you sharing your health outcomes with each other, finding other patients like you and learning from the information that you have all shared. That’s why “Share, Find and Learn” is part of our core message at PatientsLikeMe, as it best explains how you can help each other with the in’s and out’s of your condition.

Share, Find and Learn

To give you a better understanding of what we mean, we recently asked a few patients like you for examples of how you’ve used PatientsLikeMe to “Share, Find and Learn.”

PATIENT 1 (MS)

SHARE: “I’ve shared as much information [as possible] about the medications I’ve taken and still take and the CCSVI procedure that I recently went through. ”

FIND: “It’s helped tremendously when there are others that have undergone the same treatment or procedure in that we can share updates or milestones.”

LEARN: “We are all in the same boat. I’ve learned a lot about diets, vitamins and exercise, but most of all, I’ve learned to always keep the faith and never give up on hope.”

PATIENT 2 (MS, asthma)

SHARE:  “On the graph of the Multiple Sclerosis Rating Scale with time [which monitors the progression of MS], you have added reference percentiles to let folks know how they are doing relative to the rest of the population.”

FIND: “I just searched for females between 30 and 65 with three stars and could easily see who was doing better than average and who was doing worse than average.”

LEARN: “If someone is trying to decide about ‘medication versus no medication,’ they can fairly easily spend some time comparing how those who take medication are doing versus those who do not and make a decision for themselves.”

PATIENT 3 (fibromyalgia, Lyme disease, peripheral neuropathy, Babesiosis)

SHARE: “It is fascinating…how what one person learned about their condition, how to deal with it and what is normal, etc., can be communicated to everyone via this website.”

FIND: “I would like to do a search based on other members who also have chronic Lyme disease.” (Note: This is now possible, thanks to the recent upgrade. Use the search filters on the Patients page to find the nine members currently reporting Lyme disease.)

LEARN: “I actually have relieved one of my symptoms, in part due to PatientsLikeMe- and have found validation for this new treatment through PatientsLikeMe that I hadn’t seen otherwise. I’ve been a member since November, so that is amazing success in a short time.”

Thanks to all three members for sharing their thoughts and experiences. Why not see what you can “Share, Find and Learn” today?

PatientsLikeMe member kbrigham


Mood Patient Interview: How Far I’ve Come

Posted January 27th, 2011 by

We continue our series from last week of getting to you the person, not just the “patient.” Here’s an interview with member “Bradley25,” a member of our PatientsLikeMe Mood Community who was interviewed for our January newsletter.   Read on to learn more about how comparing his condition over time has helped give him hope as well as his goals for 2011 .  Enjoy!

* * *

2166 (Amy) Where do you find hope?
bradley25 (bradley25) I find hope when I look at my continued progress. When I look back and compare the severity of my condition over the years, I am amazed at how far I have come.

Fifteen years ago, my life was a complete wreck. I was in and out of the hospital and had trouble holding a job for more than a few months. Ten years ago, I had many of the same problems but life was improving from a treatment plan that I held. Within the last five years, I have found a good doctor and am properly medicated.

Although life isn’t perfect today, bipolar disorder no longer controls my life, and I find it interferes less and less with my job, social life and daily routine.

2166 (Amy) What was the highlight of your holidays?
bradley25 (bradley25)

The holidays did not go so well for me this year. I had fun spending time with the family and seeing some old friends, but my family visit was a little too long and I was ready to leave shortly after my plane landed. Unfortunately, this year’s holiday highlight was the return trip to the airport since I knew it would not be long until I was back in my own home.

2166 (Amy)  What are you resolutions or goals for 2011?
bradley25 (bradley25)

I made some drastic changes to my life in July and plan to continue to work towards these goals. The most important change I have made in my life is sobriety. I am clean and sober and have been for the last six months. This change was a long time coming and is the largest obstacle in my long-term physical and mental health. Although it is often difficult, I notice many positive changes in my attitude and overall health.

2166 (Amy)  What are you most interested in learning from other patients this year?
bradley25 (bradley25)

I find I offer advice to patients more often than I listen. Offering advice helps me; it makes me think about what I am suggesting. More often than not, I find I offer good advice that I do not necessarily follow myself. Hearing the words come out of my mouth can cause me to think about why I may not be doing what I am suggesting and to make changes in my own life.

2166 (Amy) Thanks so much for sharing, bradley25!

The Patient Voice – Loud and Clear

Posted September 1st, 2009 by

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 say, so please share on.

Once again, special thanks to our summer intern, Shane, for his work on the video!


Sharing to Feel Better

Posted April 10th, 2009 by

familyfun-sandbox Sharing.  It’s a concept we all learn at a very young age.  Oftentimes reminisced as happening in the sandbox, we think back to our young selves giving up what we hold most dear (in this case, some cheap plastic toy) to allow someone else to benefit from it.  It seems so simple and obvious, but how many toddlers do you know that immediately give into the concept…easily handing over that toy without a moment of hesitation or a slight tug back or possibly the more extreme screaming tantrum?   Over time, what happens is that the more they share, the more they see it puts a smile on their friends’ face, or gives them something in common to “chat” about.

You don’t need to be clairvoyant to see where I’m going with this.  Sharing is at the core of PatientsLikeMe, and it’s what makes our communities so special.  More than 32,000 patients are online sharing something they hold dear — details about their health — so that others can see it, learn from it, and dialogue about it.  It’s truly inspirational and something we believe is transforming healthcare as we know it.

But sharing doesn’t have to stop there.  From a marketing perspective, one of the most widely used and successful viral tactics is the “Share This” button.  You see it everywhere online – blogs, news articles, videos, and more.  We just recently implemented it across our site, so patients can “Share This” treatment or symptom report, press releases, research findings, etc.  It’s an easy way to pass that “toy” across the cyber-sandbox to others who might learn or benefit from it.

It’s nice every once in a while to think back to what we learned as kids and figure out a way to incorporate those values into our adult lives.  Sharing is just one of those things.

So you weren’t the type to share your toys?  Feel like you share too much?  Comments are welcome below.

PatientsLikeMe member lscanlon