Team of Advisors

Getting to know our Team of Advisors – Deb

You’ve been introduced to five members of the PatientsLikeMe Team of Advisors so far: Karla, Emilie, Becky, Lisa and Dana. This month, meet Deb, a freelance medical writer who was diagnosed with multiple sclerosis (MS) in 2009. Learn about her journey and what being a part of the Team of Advisors means to her.  About Deb (aka ruby1357): Deb has spent most of her professional life as a freelance medical writer and editor. Over the years, she has worked with many health and medical organizations. Currently she works in cardiac surgery research for a major hospital system in the Washington, DC, metropolitan area. Deb’s primary professional interest has always been patient education. She believes that “knowledge is power”―that clear and accurate information can ease patients’ fear and uncertainty when faced with a serious diagnosis, that anyone is capable of understanding even the most complex research if it is presented appropriately, and that information doesn’t have to be dumbed down for patients to understand it. Deb was diagnosed with MS in 2009. Her passion is dressage, and she credits her horse, Gwen, and riding as the most important and effective “treatments” for her MS symptoms. Deb on patient centeredness: “I feel …

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Getting to know our Team of Advisors – Karla

This past Monday on the blog, Emile shared about her fibromyalgia and what being a part of the PatientsLikeMe Team of Advisors means to her, including how she hopes to help doctors understand that patients need to be treated as individuals, rather than just disease names. Today, we’re featuring Karla. She’s also a member of the Team of Advisors living with fibromyalgia as well. Read below to learn Karla’s views on patient-centeredness, open communication and healthcare in a rural community. About Karla (aka kam-turtle) Karla refers to herself as a Southern Gram, who tries not to let her fibromyalgia get in the way of having fun with her grandkids. Karla served as president of a community college prior to retiring from full-time employment in 2010. She has led volunteer boards and fundraising groups, worked in public relations and advertising, and actively worked in a variety of roles in her church. She continues to work part-time as a grant writer, researcher, and owner of a chicken farm where she has a rooster named Handsome. 🙂 After spending a long time finding treatments that worked for her, Karla is passionate about helping others shorten the time between diagnosis and condition management, and she would like there …

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Getting to know our Team of Advisors – Emilie

If you’ve been following the blog, you’ve already met three members of the PatientsLikeMe Team of Advisors – Dana who is living with bipolar II, Lisa who is living with Parkinson’s and Becky who is living with epilepsy. Now, we’d like to introduce Emilie, a social worker and therapist who is living with Sjogren’s Syndrome and fibromyalgia. About Emilie (aka Memmie) Emilie is a Licensed Clinical Social Worker (LCSW) who works with children living with chronic illnesses and their families. She’s also been a therapist for both children and adults with chronic illness and in her work has developed a pediatric diabetes pain management program. Emilie herself has an autoimmune disease, fibromyalgia — and recently had to resign from this work that she loves due to the pain, fatigue, and subsequent emotional strain. She hopes to return to doing similar work once her medical issues are more manageable. Emilie on patient centeredness Emilie believes the question should be asked, “what are the ways your health care provider(s) could be more helpful to you?” to better our understanding of patient centeredness. She believes that doctors need to listen to and respect that their patients know their bodies best. Emilie on being part …

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PatientsLikeMe members to be highlighted in patient empowerment webinar

Many PatientsLikeMe members talk openly about the reasons why they donate their health data and why they believe patient-centered healthcare means better healthcare for all. And just a week from now, two of them will be sharing their stories with everyone in a live webinar. On Tuesday, January 20th, at 2:00pm EST, the Partnership to Improve Patient Care (PIPC) is hosting their first “Patient Empowerment Webinar,” an online event focusing on the importance of patient engagement in their own healthcare and in health policy. Two PatientsLikeMe members, Ms. Laura Roix and Ms. Letitia Brown-James, will be participating in the discussion, and their experiences will be a part of the webinar. Here’s a little bit about Laura and Letitia, and more ways they’re already empowering others: Laura is a member of the idiopathic pulmonary fibrosis (IPF) community on PatientsLikeMe, and she recently traveled to Maryland to speak at the Food and Drug Administration’s (FDA) Patient-Focused Drug Development Public Meeting on IPF.  Laura went with our very own Sally Okun RN, VP of Advocacy, Policy and Patient Safety and spoke about her journey and what it’s like to live with IPF. (She recapped her experiences in an October blog interview.) But that’s …

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2014 recap – part II

2014 was full of new partnerships, research initiatives and PatientsLikeMe milestones (we just celebrated our 10th anniversary last week!), and in 2015 we’ll continue to put the patient first in everything we do. At PatientsLikeMe Everything we do starts with the community that shares their health data and experiences, which enables innovation and change in healthcare, for good. Here’s just some of what everyone helped accomplish in 2014: We formed our first-ever, patient-only Team of Advisors to give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients. Three new advisors were named to the Scientific Advisory Board for the Open Research Exchange (ORE), a platform where researchers design, test and share new measures for diseases and health issues. The board was formed in 2013 to lend scientific, academic, industry, and patient expertise to ORE The community celebrated the sixth anniversary of PatientsLikeMeInMotion™. We worked with Tam, a PatientsLikeMe MS member, to develop the first-ever patient led health measure for chronic pain on the Open Research Exchange. She’s going to start testing the measure in January and it will be available in the ORE library in 2015. Data for Good …

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Getting to know our 2014 Team of Advisors – Becky

So far, we’ve introduced you to two members of the PatientsLikeMe Team of Advisors – Dana (bipolar II) and Lisa (Parkinson’s). Today, say hello to Becky, a retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer. About Becky (aka Rebelor) Becky is a former family nurse practitioner, medically retired from military service. Used to a life in service, Becky is always prepared to get up and go, so when we called upon her to participate in the Team of Advisors, she was ready! When describing her journey with epilepsy, Becky said her initial complex partial seizures felt like divine intervention—she was waiting for the big answer or revelation, but the seizure would end just before discovery. Unfortunately, her journey with epilepsy collided with a journey with breast cancer, but she’s three years out of treatment and doing great. Becky uses her GI Bill to study philosophy, religious studies and creative writing. Becky’s view on patient centeredness Becky believes patient centeredness is the “holistic consideration of a person beyond gender and race. The cultural, spiritual, situational picture of the test subject.” Becky on being part of the Team of Advisors “Being a member of …

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Getting to know our 2014 Team of Advisors – Lisa

A few weeks ago, we kicked off the “Getting to know our 2014 Team of Advisors” blog series with Dana, a PatientsLikeMe member from New Jersey that is living with bipolar II. And now, we’d like to introduce you to another member of the team – Lisa.  About Lisa (aka lcs) Lisa’s recent work experience was to help healthcare providers improve care delivery working for Cerner Homecare, a home health/hospice software solution, and Press Ganey, a patient satisfaction measurement/improvement organization. She is very knowledgeable about providers/systems and the flaws in the system. She was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime somnolence, and she is now a volunteer at National Patient Advocate Foundation, and a Mom whose daughter just got married in June.   Lisa on being part of the Team of Advisors “When we had our first in-person meeting in Cambridge, we were a group of strangers who had no idea what to expect. We quickly learned we were connected by our common experiences and our passion to improve the patient’s experience. I think we were …

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Getting to know our 2014 Team of Advisors – Dana

Just last month, we announced the coming together of our first-ever, patient-only Team of Advisors – a group of 14 PatientsLikeMe members that will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process. So where did we find our 2014 team? We posted an open call for applications in the forums, and were blown away by the response! The team includes veterans, nurses, social workers, academics and advocates; all living with different conditions. Over the coming months, we’d like to introduce you to each and every one of them in a new blog series: Getting to know our 2014 Team of Advisors. First up, Dana. About Dana (aka roulette67) Dana is a poet and screenplay writer living in New Jersey. She is very active in the Mental Health and Behavior forum. She is open to discussing the …

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PatientsLikeMe Develops Patient and Scientific Advisory Boards

Company Forms First Member-Based Team of Advisors, Names New Participants to ORE Scientific Advisory Board CAMBRIDGE, Mass.—September 17, 2014—PatientsLikeMe has formed its first-ever, patient-only Team of Advisors to give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients. The company also named three new members to the Scientific Advisory Board for Open Research Exchange (ORE), a PatientsLikeMe platform where researchers design, test and share new measures for diseases and health issues. ORE was created with support from the Robert Wood Johnson Foundation. A long-time advocate for the patient voice in medical research, PatientsLikeMe posted an open call for the patient-led Team of Advisors in its member forums and was overwhelmed with applications. “Our members are at the heart of our pioneering approach to research, and they’re very focused on sharing their experience to improve medicine,” said Executive Vice President of Marketing and Patient Advocacy Michael Evers. “Now their voice will extend even further as we continue to revolutionize the way that healthcare is developed and delivered.” Team members are representative of the PatientsLikeMe community at large and include veterans, nurses, social workers, academics, and advocates. They range in age …

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