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Working with a condition: Your rights and options for sharing with your employer and taking leave

Conditions, Patient Experiences / By

Have you ever struggled with managing your health condition(s) while holding down a job? Or worried about missing too much work because of your unpredictable symptoms? Team of Advisors member Hetlena (TheLupusLiar) is living with lupus and is very interested in the topic of balancing work with a chronic health condition. She helped us develop these infographics, which apply to people with any medical condition. Sharing about your diagnosis at work Do you need to tell your employer? What can and can’t they ask you about your health? What role should your human resources department play? Find out in this infographic. (If you want to go deeper into these topics, here’s a good resource with answers to more questions like this.) Work leave rights, at a glance This infographic helps explain work leave under the Family and Medical Leave Act (FMLA) and the American Disabilities Act (ADA) – and how they can cover you when going to work isn’t possible because of your condition. If you’re looking for more than an intro to the FLMA and ADA, you can find the full details here. On PatientsLikeMe More than 51,000 members have listed “working with my condition” as an interest on …

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Paul Wicks on the power of sharing data

ALS, Patient Experiences, Research / By

Back in December, our VP of innovation, Paul Wicks, Ph.D., spoke at the annual International Symposium on ALS/MND in Dublin. The goal of the annual meeting is to share new understandings of ALS/MND as quickly as possible through collaboration between leading researchers around the world. Now, we’re sharing a video of his presentation about what you and the ALS community has shared about living with ALS over the last 10 years. Here’s what Paul had to say: “We hope this presentation shows the power of patients sharing their data to help shed light on ALS. It’s a disease that can isolate people, rob them of their voice, and sap their strength to fight back, so we’re proud that we’ve been putting the data our members share to good use for over a decade now and we’re keen to share some highlights of what we’ve found.” What do you think about Paul’s presentation? Share your thoughts in the forum. Share this post on Twitter and help spread the word.

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

2 Comments / Patient Experiences / 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 …

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2014 recap – a year of sharing in the PatientsLikeMe community

ALS, Bipolar disorder, Diabetes, Epilepsy, Fibromyalgia, Idiopathic Pulmonary Fibrosis, Mental Health, Multiple Sclerosis, Parkinson's Disease, Patient Experiences, Pulmonary fibrosis / By

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes. A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015. Team of Advisors In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015. Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and …

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PatientsLikeMe launches “24 Days of Giving” to encourage sharing of health data for good

Patient Experiences / By

Napkin Notes Dad Garth Callaghan Joins Campaign Calling on People to Donate Health Data Starting on Giving Tuesday CAMBRIDGE, Mass. (November 17, 2014) – On December 2, PatientsLikeMe will launch a new campaign that will extend through the month and ask people to rethink their giving this year. PatientsLikeMe is calling on patients who are living with a chronic condition to donate their health data after donating to their favorite non-profit on Giving Tuesday. The December campaign, officially branded “24 Days of Giving,” asks patients to simply share their health data for good. To do so, they can create a profile on PatientsLikeMe and start tracking their symptoms, treatments and quality of life. By sharing this data on the site, patients not only help themselves, but help others who can learn from their experiences, and advance research. “Our members have learned how to live better day-to-day and have contributed significantly to medical research,” said Michael Evers, PatientsLikeMe’s Executive Vice President of Marketing and Patient Advocacy. “We hope more will consider sharing their health data for their own, and the greater, good.” At PatientsLikeMe, health data includes information about a disease or condition—how people live with it, what their doctors are doing to treat it, and …

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“Sharing has given me support” – PatientsLikeMe member Debbie opens up about her MS

6 Comments / Multiple Sclerosis, Patient Experiences / By

As PatientsLikeMe member Debbie (chilli123) says, it’s a very private decision whether or not to discuss MS openly. But as you’ll read, she’s doing more than just speaking about her MS – Debbie is spending time with others so they can better understand what life with a chronic condition is like. Debbie also talked about what it’s like to be a mom living with MS, her volunteer work with Penn’s LEAPP program and the inspiration behind her MS blog Adaptolution. Read on for her full interview. A lot of MS members have shared that finding a diagnosis isn’t always easy – what was your experience like? For the first eight years of living with MS, the disease was not visible to those around me. However, I have not shied away from discussing my disease. If I can educate one more person about life with a chronic illness, then I could make someone else’s struggle just a bit easier because they will be encountering people who understand. Everyone around me has been supportive. It is a very private decision whether to discuss MS openly – for me, it has allowed others to come into my world a little more and chronic …

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PatientsLikeMe launches “Data for Good” campaign to encourage health data sharing to advance medicine

Patient Experiences / By

Public Service Announcement-Style Video Calls Patients to “Donate Your Data for You. For Others. For Good” CAMBRIDGE, MA – March 10, 2014 – Today, PatientsLikeMe kicks off a new campaign promoting the value of sharing health information to advance research. In a series of public service announcement-style videos, the company highlights a movement called “data for good,” which underscores the power of donating health data to improve one’s own condition, help others and change medicine. “This year marks the 10-year anniversary of when our co-founders first introduced the idea that openness in healthcare is a good thing, and should be encouraged and celebrated,” says Michael Evers, Executive Vice President of Marketing and Patient Advocacy at PatientsLikeMe. “The ‘data for good’ campaign is our way of tipping our hats to the massive amounts of data that our members have shared to date. It’s also meant to inspire more people to contribute their experiences to accelerate research. In the video series, PatientsLikeMe co-founder Jamie Heywood walks people through the journey of being diagnosed with a life-changing condition and frames the underlying problem in creating a patient-centric healthcare system. He then asks everyone to participate in a movement around health data donation – …

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Social media users say ‘yes’ to sharing health data

1 Comment / Patient Experiences / By

There are some new survey results that just came out from the Institute of Medicine’s Evidence Communication Innovation Collaborative (ECIC) that show social media users give the stamp of approval to sharing health data. (A big, public shout out to the more than 2,000 PatientsLikeMe members who participated in the survey.) It’s very exciting to see the voices of so many in the community having such an impact. Check out the results below and read more about it in the PatientsLikeMe newsroom.  

A life well lived: Giving and sharing with PatientsLikeMe member Geof

9 Comments / Conditions, Multiple Sclerosis, Patient Experiences / By

At PatientsLikeMe, we believe that the patient voice is what can change healthcare for good, so we’re always excited when our members take the time to talk about their personal stories with the community. This week, Geof, a PatientsLikeMe multiple sclerosis (MS) community member with a big heart and an even bigger family, shared his health journey, his philosophy on giving, and the meaning behind his username life well lived. When were you first diagnosed with MS? What was it like? How did it impact your day-to-day life? To be honest, when I was diagnosed, it was a relief. For months I had headaches which only went away with sleep. The worst part was having them wake me up in the middle of the night. I wanted to scream, “Body! Why are you waking me up to tell me to sleep?” Then came the dizziness, and finally the double vision. I was able to get an MRI, but I was having trouble getting an appointment with a neurologist (my primary care physician said I needed one when he ordered the MRI). The radiologist said the results could only be released to my doctor. So naturally, after thinking about it for …

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Mental Illness Awareness Week: Stigmas, Stereotypes and Sharing

4 Comments / HIV/AIDS, Mental Health, Patient Experiences / 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. 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 …

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