Finding accurate and reliable health information has become more confusing for patients than ever before. By examining where patients are getting their information — for example, from trained healthcare professionals or their peers — and their ability to determine the most reliable sources can help the industry and patients better understand the importance of providing… Continue reading Health Information: What Sources Do People Trust?
Tag: social media
Patients as Partners: Cyrena on connecting through social media
Earlier this month, Team of Advisors member Cyrena shared how she relies on many of the Partnership Principles in her interactions with her physicians. Today, she offers some insight into a different type of relationship in our health journeys — the ones we have on social media. In addition to PatientsLikeMe, Cyrena is active on… Continue reading Patients as Partners: Cyrena on connecting through social media
How Social Media Helped Me Adjust to My New Life: An ALS Patient Essay
Want to connect with and learn from others with ALS? Join PatientsLikeMe Now! (It’s free) “Social media is the MOST important means of socialization, communication and education for patients and their caregivers today, particularly with a disease like ALS where our minds are still sharp and active inside our failing bodies. Sites like PatientsLikeMe, Facebook… Continue reading How Social Media Helped Me Adjust to My New Life: An ALS Patient Essay
How Social Media Is Changing Research (Part II): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell
Today’s guest post is written by PatientsLikeMe member Jeri Burtchell (TickledPink), who has been living with multiple sclerosis (MS) for 13 years. A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me: My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.” Her patient… Continue reading How Social Media Is Changing Research (Part II): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell
PatientsLikeMe® Poll Reveals Patients Share Health Data Online Prefer to Keep Quiet With Doctors, Employers
Patients Unveil Top Reasons Not to Share Health Information CAMBRIDGE, MA–(Marketwire – April 13, 2011) – According to a new PatientsLikeMe® Poll, almost one in three (29%) patients have withheld certain health information from their doctor. Of the 4,364 poll respondents, all of whom are members of PatientsLikeMe’s online health data-sharing community (www.patientslikeme.com), nearly half (47%)… Continue reading PatientsLikeMe® Poll Reveals Patients Share Health Data Online Prefer to Keep Quiet With Doctors, Employers
One for All: The PatientsLikeMe “Welcome Wagon”
In yesterday’s post, we looked at some of the ways members of the PatientsLikeMe community are connecting with other patients and the value they are getting from it. Today, we’ll highlight how one person can make an enormous difference and inspire you with her ability to connect with others. One method of reaching out to… Continue reading One for All: The PatientsLikeMe “Welcome Wagon”
One for All: The Connected Community of PatientsLikeMe
PatientsLikeMe is dedicated to building a platform for the open sharing of personal health data. So far, our community of patients have shared over 600,000 outcome surveys, 300,000 treatment histories, and 2.3 million symptom reports. We believe this enormous collection of health data will dramatically improve how patients manage their conditions. But there are more… Continue reading One for All: The Connected Community of PatientsLikeMe
PatientsLikeMe and UCB Open Free Online Community for People With Epilepsy in the U.S.
Pharmaceutical, Social Media Leaders Examine Real-World Impact of Epilepsy CAMBRIDGE, MA and ATLANTA, GA — (Marketwire – January 26, 2010) — Today, PatientsLikeMe, the leading online community for people with life-changing conditions, and biopharmaceutical company UCB open the doors to a free online community for people living with epilepsy in the U.S. Focused on learning… Continue reading PatientsLikeMe and UCB Open Free Online Community for People With Epilepsy in the U.S.
Harnessing New Media for Patient Advocacy (Part II)
A few weeks ago, I was invited to present on behalf of PatientsLikeMe at the Arthritis Foundation workshop held in Newport, RI. The presentation was on how to “harness new media for patient advocacy” – the same as what I presented at a workshop for non-profits in northern New England in August. This time the… Continue reading Harnessing New Media for Patient Advocacy (Part II)
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. … Continue reading The Patient Voice – Loud and Clear