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Patients as Partners: How Phyllis is bringing the patient perspective to future doctors

Team of Advisors member Phyllis is living with Cutaneous T-Cell Lymphoma (CTCL) as well as Hodgkin’s lymphoma. In the latest edition of of our Partnership Principles series, she tells us how she works with med school students at the University of Pennsylvania in a patient shadowing program. The goal is to help the next generation of doctors better understand the patient perspective. Below, Phyllis shares how the program gives students insight into “what it’s like to live with a serious chronic illness…personally, professionally, spiritually, financially, emotionally” — and opens up about what she’s learned about herself along the way. You’ve been partnering with medical students through the LEAPP program for a number of years now. Can you tell us a little about this program and how you got involved? LEAPP stands for Longitudinal Experience to Appreciate Patient Perspectives, and it’s a program based out of Penn Medical School that aims to teach first year medical students about what it’s like to live with a chronic illness. It’s a required part of the Penn medical education program. Medical students are paired up with a patient living with a chronic illness and they shadow them for 18 months. There are 120 future doctors …

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Meet Phyllis from the 2015-2016 Team of Advisors

 We’d like to introduce you to Phyllis, another member of your 2015-2016 Team of Advisors. Phyllis is living with Cutaneous T-Cell Lymphoma (CTCL) as well as Hodgkin’s lymphoma. Still, the former mayor of Princeton, NJ, leads an active life by spending time with her grandchildren, cheering on the Mets and taking brisk walks when she can (she’s run 18 marathons in her life). Phyllis is also involved in a mentoring program at University of Pennsylvania, in which first-year medical students shadow her for over a year. The purpose is to bring humanity back to medicine by helping the next generation of doctors to better understand the patient perspective. Below, Phyllis describes the power of a positive attitude and shares the lesson she’s learned from living with cancer: “Every day is a gift.” What gives you the greatest joy and puts a smile on your face? My eight grandchildren. In 2005 when I was diagnosed with CTCL (Cutaneous T-Cell Lymphoma) and later Sezary Syndrome, a non-Hodgkin’s lymphoma, I had three young grandchildren. Now 10 years later, I have the joy of seeing five more. I always enjoyed running. I was a marathoner (completed 18), but once I got my cancer, my …

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“Treat the person, not the disease.” An interview with nurse practitioner Phyllis Zimmer

Family Nurse Practitioner Phyllis Zimmer has a Master’s degree in Nursing and is a Fellow at both the American Academy of Nursing and the American Association of Nurse Practitioners. It sounds like Phyllis always knew she wanted to be a nurse, but truth be told, Phyllis wasn’t sure what her career path would be until she decided where to apply to college. Then it all came together. Read on as she describes her passion for nursing, her own experiences as a patient, and some of the important questions patients should ask their doctors and nurses. You seem passionate about nursing. Why did you become a nurse in the first place? The short answer? I don’t know. Maybe it has something to do with my years as a Girl Scout, and always wanting to make a difference in my life. When I was in high school, trying to decide on a college, I told my parents that I wanted to be a nurse, but I had no idea where that came from. Years later, I found out that my paternal grandmother, great aunt and her sister were all nurses. My family has a wonderful photo of the three nurses wearing long, …

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Redefining Patient Partnerships: Looking back on the 2015-2016 Team of Advisors

It’s been quite a year for the 2015–2016 Team of Advisors. This year’s team was tasked with bringing the patient voice to a central issue in healthcare: how to redefine patient partnerships. Over the past several months, they’ve worked together to rethink what it means for patients to be partners and establish new ways for the healthcare industry to deliver better care. The team introduced the Partnership Principles, outlining ways to make the most of your relationships with the many people you encounter in your health journey — from medical students to clinical trial coordinators. And through personal essays and interviews, each shared real-world examples of how they use these principles in their own lives. As their term comes to an end, we wanted to share a recap of everything they’ve done. Hover over the image below and click on each member to check out what patient partnership means to them:     Share this post on Twitter and help spread the word.

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 the site to manage their health and improve outcomes. During her visit, Dr. Biden was greeted by Co-founder Ben Heywood, who introduced her to some of the folks behind the scenes here at PatientsLikeMe. Ben sat in on a roundtable discussion with Dr. Biden and four patients from our community — Phyllis, Jackie, John, and Laura. Here’s what he had to say about what the experience meant to him and PatientsLikeMe… PatientsLikeMe was founded on a simple idea: when patients connect to share their experiences, they can learn from each other how to better manage and treat their disease, and improve their outcomes. We’ve been honing the way we help our members do this for over a decade now, but Dr. Biden’s visit last month was external validation of this simple idea inspired by my brother Stephen’s ALS — and the not-so-simple work that our …

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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 new ways for the healthcare industry to connect with patients to deliver better care. PatientsLikeMe CEO Martin Coulter said that in an era when patients must be front and center in healthcare discovery and development, the group’s mission is vital to every patient, pharmaceutical company, regulator, payor and provider. “This advisory team includes some of the strongest patient advocates we have ever met. Their experience can empower other patients, and help those serving patients understand what it means to be a good partner. The team’s work will help create a stronger foundation for a more equal and participatory system of care. More than 1,400 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. The nearly equal mix of men and women are living with a cross-section of conditions, including amyotrophic lateral sclerosis …

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