Things I Wish My Doctor Would Do

You have been experiencing a mix of symptoms for a while, fatigue, headaches, muscle soreness, and shortness of breath. Wondering if it’s something like stress or a more serious condition, you visit your doctor with the hopes of getting some answers. But instead, your doctor gives you a quizzical look and sends you on your way with more questions… Continue reading Things I Wish My Doctor Would Do

Advance directives: What are they and why should you have one?

If you find talking about end-of-life care and advance directives isn’t easy, you’re not alone. One 2013 survey by The Conversation Project found that while 90% of respondents said talking about it with loved ones is important, only 27% actually started the conversation. And according to another recent study, as few as 38% of patients living with a… Continue reading Advance directives: What are they and why should you have one?

The power of your data: Patient empowerment

We’re more than halfway through 24 Days of Giving and we’ve been sharing how patient data has the power to create better communities, better care and a better you. So, while we’re on the subject of you – let’s talk more about how patients see themselves as the captains of their own health when it… Continue reading The power of your data: Patient empowerment

#ChatActChange: empowered to chat, act and make change – together

On October 28, Sally Okun, our Vice President for Advocacy, Policy and Patient Safety, participated in a Twitter chat – using the hashtag #ChatActChange – aimed at empowering people living with chronic conditions to advocate for policy change. Hosted by Diabetes Social Media Advocacy (DSMA), other chat participants included policy expert Susan Dentzer, Diabetes Hands… Continue reading #ChatActChange: empowered to chat, act and make change – together

PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships

Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 2015–2016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing… Continue reading PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships

“Does anyone in healthcare want to be understood?” Sally Okun from PatientsLikeMe at TEDMED2013

It’s no secret that here at PatientsLikeMe, we think that the voice of the patient — your voice — is the number one way to drive medical advancements. At TEDMED 2013, our very own Sally Okun shared that message on one of the world’s largest stages. She asked the audience a very simple question. “Does… Continue reading “Does anyone in healthcare want to be understood?” Sally Okun from PatientsLikeMe at TEDMED2013

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… Continue reading TEDMED 2013: Creating and experiencing wow!

Partnering with Patients to Improve Healthcare

Last week I had the pleasure of attending the Institute of Medicine’s (IOM) Partnering with Patients workshop, where PatientsLikeMe’s Health Data Integrity & Patient Safety Director Sally Okun, RN, MMHS, and PatientsLikeMe member Laura Phillips, who has multiple sclerosis (MS), shared the stage as co-presenters. It was a novel approach to incorporate a patient co-presenter into… Continue reading Partnering with Patients to Improve Healthcare

PatientsLikeMe Update: May 2007

This month is momentous because we’re celebrating a major milestone at PatientsLikeMe. We now have over 1,000 PALS in our community. Thank you for making PatientsLikeMe your home and spreading the word to other PALS. The more patients we have, the more we learn from each other. We are also thrilled to announce the debut… Continue reading PatientsLikeMe Update: May 2007