PatientsLikeMe Co-founder Ben Heywood reflects on a recent visit from Dr. Jill Biden

Last month, PatientsLikeMe was honored to host a special visitor — Dr. Jill Biden was in town as part of the Cancer Moonshot Initiative announced by President Obama in his 2016 State of the Union Address. She made time to stop by our office to learn more about how PatientsLikeMe works and how members use… Continue reading PatientsLikeMe Co-founder Ben Heywood reflects on a recent visit from Dr. Jill Biden

RWJF Awards Grant to PatientsLikeMe to Develop New Measures for Healthcare Performance

Patient Network to Work with the National Quality Forum to Ensure Patients Drive Healthcare Value   CAMBRIDGE, MA., December 8, 2015—PatientsLikeMe has been awarded a $900,000 grant from the Robert Wood Johnson Foundation (RWJF) to help jumpstart changes that will amplify the patient voice in the measurement of healthcare performance. A portion of the grant funds… Continue reading RWJF Awards Grant to PatientsLikeMe to Develop New Measures for Healthcare Performance

The Theory of Everything

Between the Ice Bucket Challenge and movies like “You’re Not You” (about a classical pianist who is diagnosed with ALS), there has been a ton of awareness going on for ALS, with many efforts focused on the personal stories of people living with the neurological condition. And this month, ALS is being spotlighted again in… Continue reading The Theory of Everything

A new collaboration and the work ahead: An interview with PatientsLikeMe Co-founder and President Ben Heywood

Earlier this week, PatientsLikeMe announced a five-year collaboration with Genentech. Our goal? To bring your experience – the patient experience – to a company that wants to learn more from the people who are living with serious diseases, and to better integrate your insights into their decision-making as they develop new medicines. PatientsLikeMe Co-founder and… Continue reading A new collaboration and the work ahead: An interview with PatientsLikeMe Co-founder and President Ben Heywood

PatientsLikeMe creates largest open registry of IPF patients in the world

Community One of Website’s Fastest Growing; Reveals Real-World Picture Of Daily Life With the Rare Lung Disease CAMBRIDGE, Mass.— August 22, 2013—In a few short months, PatientsLikeMe has created the largest open registry of idiopathic pulmonary fibrosis (IPF) patients online, and some of the most current patient-reported data on the disease. The information the community… Continue reading PatientsLikeMe creates largest open registry of IPF patients in the world

PatientsLikeMe Names Kim Goodwin and Sally Okun to New Web and Patient Advocacy Positions

CAMBRIDGE, Mass.— March 19, 2013—PatientsLikeMe appoints Kim Goodwin and Sally Okun RN to two newly-created positions that will keep patient needs upfront as the company continues to enhance its website and drive industry and government to make more patient-centric decisions. Kim Goodwin has been named Vice President (VP) of User Experience (UX) and Sally Okun has… Continue reading PatientsLikeMe Names Kim Goodwin and Sally Okun to New Web and Patient Advocacy Positions

PatientsLikeMe and Merck Establish Health Information Collaboration Focused on Psoriasis

Patient-Based Research Aims to Produce New Insights Into Most Common Autoimmune Disease in U.S. CAMBRIDGE, Mass. — Aug 13, 2012 — PatientsLikeMe announces it has entered into a collaboration with Merck, known as MSD outside the United States and Canada, to evaluate the impact of psoriasis on patients and to inform a novel approach to improving outcomes. “A… Continue reading PatientsLikeMe and Merck Establish Health Information Collaboration Focused on Psoriasis

Behind Every Piece of Data Is a Patient

(This post has been repurposed from an article written by PatientsLikeMe’s Ben Heywood for eyeforpharma’s Patient’s Week 2011.) Real-world, patient-reported data is becoming more important to you, the patient, as well as everyone in healthcare. One source of that data is patient registries. According to the US Department of Health & Human Services’ Agency for Healthcare Research… Continue reading Behind Every Piece of Data Is a Patient

The Patient Rules. A Discussion with the PatientsLikeMe Executives

We recently sat down with our executive team here at PatientsLikeMe in our first-ever roundtable-format podcast.  In this PatientsLikeMeOnCallTM interview, we ask Co-founders Ben and Jamie Heywood, Chief Marketing Officer David S. Williams III, and R&D Director Paul Wicks PhD to discuss why our recent series themes are so important to the history and future… Continue reading The Patient Rules. A Discussion with the PatientsLikeMe Executives

PatientsLikeMe at Health 2.0: Paths to Insight

Last month, I spoke once again at the Health 2.0 conference in San Francisco.  The video of my presentation is now online.  Here’s a snapshot of what I covered in the 6-minute talk: As I note in my presentation, there are a lot of caveats to what I have up on the screen.  We as… Continue reading PatientsLikeMe at Health 2.0: Paths to Insight