16 posts tagged “PatientsLikeMe news”

“You’re the only expert of your own life and your own body.” Author Nilofer Merchant shares why she featured PatientsLikeMe in her new book

Posted 7 months ago by

“Onlyness. It’s not a word in the English dictionary, but it should be.” We sat down with author, TED Talk speaker and innovator Nilofer Merchant to talk about her new book The Power of Onlyness, and the role that the PatientsLikeMe story plays in it.

Advocating for “Onlyness”

Nilofer has been championing the idea of “Onlyness” since 2012, when she first introduced the term in her Harvard Business Review-published book 11 Rules for Creating Value in the Social Era. “Onlyness” is the idea that “each of us, every single one of us can add value in the world. Not just the credentialed people, not just the educated people, but each and every single one of us.

“The young, the sick, the neglected – these are not typically the people whose ideas are heard.” She says. “Most often, whether ideas are considered or dismissed is based on who contributes them, and how powerful their sponsors – not the ideas themselves – are.”

Raising a collective voice

Nilofer studied over 300 examples of companies bringing “Onlyness” to the forefront and chose 20 to feature in her book, including PatientsLikeMe.

“PatientsLikeMe is allowing the levers and power systems to benefit the user,” she says. “It’s also letting users actually say ‘here’s my experience with this medicine’ which is an incredibly empowering thing. It lets us compare notes, it lets us not feel alone, we start to ask better questions, we can help each other. So of course it’s going to change the healthcare system because in the past the doctor was the expert, but you’re the only expert of your own life and your own body.”

The book dives into how current systems, from healthcare to business and more, are set up in a way that keep the “experts” in charge. Nilofer, however, explores and reveals the power of what she refers to as a “distributed network” where each of us can gather around a shared purpose, and, by connecting our shared will, become powerful enough to make change happen.

Turning up the volume

In the book, Nilofer shares the story of Ed Sikov, a PatientsLikeMe member living with Parkinson’s disease. Ed visits PatientsLikeMe every day, as he explains, because it can “help the next guy.” By sharing about his treatments, symptoms, side effects and more, he’s joining a powerful collective voice that demands to be heard.

“When I share information, I help others,” says Ed in the book. “It might become clear that one treatment works better for people my age, or that simple shift of when I take a drug changes how I respond. Sharing my own data lets all of us have more insight.”

Harnessing your “Onlyness”

Nilofer says she wrote this book “to try to talk to how much we screen people out based on titles, based on packaging…and we do it to ourselves, too. 61% of us tell ourselves that our own opinions and ideas don’t count. We negate ourselves instead of celebrating that thing only we can bring. We end up seeing ourselves through the boxes that other people see us in.”

So how can you own your “Onlyness”? “It’s about claiming your own life story as relevant,” Nilofer says. “The first step of claiming “Onlyness” is to claim that spot in the world where only you stand. It’s to accept, and celebrate and embrace all of it, whatever it looks like, even if it doesn’t look like conventional thinking. That’s how really new ideas come to bear.”

You can find out more about The Power of Onlyness and Nilofer Merchant on her website, nilofermerchant.com.

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PatientsLikeMe Adds Patient Reviews of Medications to Walgreens.com

Posted November 17th, 2016 by

Real-World Reports on Use, Effectiveness and Alternative Medications Now Available for Thousands of Brand Name and Generic Drugs

CAMBRIDGE, MA., November 17, 2016PatientsLikeMe has expanded the scope of patient-reported information it offers through Walgreens.com to help more people better understand how certain prescription medications may affect them.

The new information, which is updated daily and comes from aggregated reports by PatientsLikeMe members, highlights the reasons why patients use specific prescription drugs and how effective they think they are. Also included are lists of the top five medication alternatives patients have tried for the same condition, as well as links to more extensive reports about dosage, duration, adherence and burden for more than 5,000 medications.

PatientsLikeMe is a free network where anyone living with a chronic condition can track and share symptom and treatment experiences, connect with others and contribute data for research. The website has helped more than 400,000 people learn from each other about how to improve outcomes.

Walgreens is the first pharmacy to provide PatientsLikeMe reports about medications on its website. The offering is an expansion of the collaboration between the two companies formed in 2015, when PatientsLikeMe first offered its patient-reported information on medications’ side effects and their severity on Walgreens Health Dashboard, a secure and private personalized health information offering.

“Whether you’re just starting a new medication or you’re researching alternatives, knowing what others have already experienced is invaluable,” said Michael Evers, PatientsLikeMe’s Executive Vice President of Marketing, Technology & Operations. “We’re excited that our members are helping more people know their options and what to expect, so that everyone can make more informed choices for their health.”

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 nonprofits develop more effective products, services and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 80 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
(781) 492-1039
mcdelogne@patientslikeme.com