patient voice

“We are all connected”: Check out this new video starring the 2018 Team of Advisors

Have you had a chance to meet the 13 members selected to join the 2018 Team of Advisors? Get a glimpse of the dynamic group in this new 2-minute video, and keep an eye on the PatientsLikeMe newsfeed and Facebook page for their individual videos and stories. This group will be collaborating with us in the next year to offer feedback on new research and product development, to advocate on behalf of patients, and provide real-world perspectives to PatientsLikeMe and our partners. Say hello to the team! From left to right in the screenshot above: (Back row) Marcia Holman (@marcia_holman), living with multiple myeloma and breast cancer Rich Pollock (@rcpollock), living with ALS Rosie Stambaugh (@ClairHart), living with major depressive disorder and fibromyalgia LaKeisha Parnell (@Hope4ull2), living with epilepsy Susan Tomasic (@SusanT318), living with rheumatoid arthritis Kip Edwards (@Kip_Edwards), living with multiple sclerosis Paul Tavano (@PaulT), living with ALS Elizabeth Asdorian, (@e_sf) living with multiple sclerosis Bernadette Mroz (@yellsea), living with Parkinson’s disease Alysia Taylor (@stormyND), living with bipolar disorder (Front row) Christine Von Raesfeld (@Cvonraesfeld), living with lupus Jeanette Alston-Watkins (@JeanetteA6872), living with lupus Melinda Lowery (@MelindaAnn), living with rheumatoid arthritis This group is available as a resource to the rest of the PatientsLikeMe …

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Lupus flares: Stats and infographics based on the PatientsLikeMe community’s experiences

Lupus flares are hard to define. In fact, there wasn’t a clear clinical definition of flares until 2010 (and even that definition is pretty broad). If you’re living with lupus, how would you define a flare? What do you experience during one? To gain a deeper understanding of flares from the patient perspective, the PatientsLikeMe research team partnered with Takeda Pharmaceuticals to study our online community’s discussions and data related to flares. Check out these graphics that show some of the key findings about flares among patients with systemic lupus erythematosus (SLE), the most common form of lupus. A mix of symptoms Below are the five symptoms researchers spotted most frequently in SLE forum posts about flares. Other flare symptoms mentioned in the forum include: nausea, fever/flu, lupus fog, hair loss, migraine, back pain, blood pressure, bloody nose, insomnia, mental health effects, panic, rib pain, skin sensitivity, swollen glands, weakness, weight gain, lower GI, face tumor, hives, infection, vasculitis, and voice effects. “I was really flaring…” PatientsLikeMe researchers say that a flare is “a cluster of symptoms which usually includes pain and fatigue, at a minimum.” But the specifics may vary: Everyone describes their flares — and their duration — differently. Here are just …

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From preclinical to approval: How clinical trials bring new treatments to market

Often we hear of new treatments becoming available, but have you ever wondered what each new treatment had to go through to get approved by a regulatory body like the FDA? Before a new treatment is approved for commercialization, it needs to go through a meticulous trial process to prove a number of things: Is the drug safe? What are the potential side effects? Does the drug do what it’s supposed to do? All of these questions and more need to be answered before a drug can be considered for approval by the FDA, so that’s where clinical trials come in. Here’s a breakdown of what’s involved in the drug development process, from preclinical through to commercialization and post-approval monitoring. (Click to enlarge) How can I participate in a clinical trial or find out more? You can learn more about research and clinical trials by joining or logging into PatientsLikeMe and clicking on the Research tab Use the PatientsLikeMe Clinical Trial Finder to search for trials that could be a good fit for you Check in with local associations and hospitals to see if they are recruiting for any trials Talk to your healthcare provider/clinician to see if there are opportunities …

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It’s Clinical Trials Day, and patients are driving change

Today is Clinical Trials Day – celebrated to bring more attention to public health and also to recognize the contribution of the patients and healthcare professionals who make clinical research possible. At PatientsLikeMe, it’s members who are changing the way clinical trials are designed. Bringing the patient voice to clinical trials has long been part of the PatientsLikeMe mission. Jeremy Gilbert, Vice President, PLM Health and Paul Wicks, Ph.D., Vice President, Innovation, sat down with us last year to talk about the importance of putting patients at the center of drug discovery and development. Check out their Q&A here. Recently, Paul Wicks touched on the purpose behind the latest PatientsLikeMe study on clinical trial design involving the patient perspective, and why organizations need to work on improving their trial process: “As researchers we know that clinical trials are the best tool we have for identifying new, safe, effective treatments. Patients know this, too, and they’re motivated to take part. But what this research tells us is that actually participating in a trial is not a fun experience; about as much fun as dealing with the worst airlines, banks, or utility companies, and we all know how that can be. This …

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“My expertise is as a person with Parkinson’s”: Member Lisa brings the patient voice to drug development

Member Lisa (lcs), a Team of Advisors alum who’s living with Parkinson’s disease, has found her advocacy niche: involving patients in drug development. Diagnosed with PD in 2008, Lisa served as a patient thought leader and co-author of a published journal article called “Increasing Patient Involvement in Drug Development.” She worked on the publication along with Maria Lowe, Pharm.D. – a health data and drug information clinical specialist at PatientsLikeMe – and other pharmacists and Ph.D.s. “I hold my co-authors in the highest regard,” Lisa says. “That said, not one of them was a person with an incurable, progressive neurodegenerative disease. My expertise is as a person with Parkinson’s.”   Maria says that having a patient co-author was “crucial” to the publication. “We wanted to look at how drug developers were incorporating patients into drug development activities and recommend some best practices,” Maria says. “How could we possibly do this without ensuring we were representing what matters to patients?” The value of partnering with patients In addition to teaming up on the research paper, Lisa and Maria also both participated in a webcast on April 12 on PDUFA VI and the Patient Voice. PDUFA stands for the Prescription Drug User …

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Loud and clear: The patient voice on the ACA

Have you had chance to check out that poll where 2,000+ PatientsLikeMe members shared their views on the Affordable Care Act (“Obamacare”)? It was the largest patient poll on potential changes to the health care law, and several media outlets are now listening up. A recent CNBC article called “The human side of the Obamacare debate” featured quotes from those who took part in the poll. Here’s a glimpse of the patient perspective: “Raising the age of dependent coverage to age 26 was a lifesaver for our daughter. ACA is not perfect as there are stories of those who’ve hated it and it cost them more money in the long run, but there are just as many positive stories of all the people the ACA helped. Health care in this country is big business and complicated. The ACA didn’t uncomplicate it, but it helped many more Americans have affordable health insurance. It is a mistake to just repeal it without anything to take its place.” Jeanne of Jackson, WI, living with fibromyalgia, depression, generalized anxiety disorder and primary biliary cirrhosis     “I lost my health insurance because my husband was laid off. Then, I had Medicaid for five months, but …

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“Do not give up, find a reason to keep going.” – An interview with ALS member Lee

Humor and a passel of grandchildren keep Lee (slicky) going. He’s been living with ALS for nearly three decades and refuses to let his condition get the best of him. Now retired, he delights in his family and is very active in our forums – welcoming new members, doling out information and sharing his positive attitude with others. We recently had the chance to catch up with him. Here’s what we learned… 1. Tell us a little about your life. You’re retired – what are you most passionate and interested about right now? I have been fighting this disease for 27 years, it has been a rough road, but I am so grateful for the time I have been given. I worked up till 10 years ago, then I retired because I could not do my job anymore. My passion in life right now is to enjoy my family, and to live long enough to see a cure. I like watching TV, playing video games, do as much Tai Chi as I can. 2. You say in your profile, “If you think you’re going to die, you will so I keep going.” You’ve maintained a very positive attitude. What helps …

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“You may not like it, but make the MOST of it.” – An interview with IPF member Nikki

When Nikki (Nimiha) was diagnosed with IPF in 2010, she was already a survivor of both ovarian cancer and a heart attack. Staying positive and up-to-date on new information is now this retired RN’s best defense – and she’s been sharing it with her IPF family on PatientsLikeMe since March. We had the chance to connect with her recently, and here’s what we learned … 1. Tell us about your life. What are your hobbies and interests? How do you most enjoy spending your time? I was born 71 years ago in a town named Escondido, in Ca. My mother had been a Wave in the Navy in Washington, D.C. where she met my father, a career Marine. It was war time and he was transferred to Camp Pendleton Marine base in Oceanside, where he was immediately sent overseas to fight. I was an only child with no family living close by so my Mother and I were very close. My father went up through the ranks and was up for Brigadier General, and was honored to take over training the 7th Marines at Camp Pendleton in 1962. Two weeks later he died of a heart attack and my mother …

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“I feel as if I’ve been given more time to spread awareness.” – An interview with ALS member Lisa

Lisa (Ltbeauti) was studying to become a teacher in Richmond, VA, when she was diagnosed with ALS—the same type that affected both her sister and father. After joining PatientslikeMe in 2008, Lisa has made it her mission to stay proactive about her health and, like any good teacher, offer support and share her experience with new members in the community. We caught up with her recently to learn more about how she copes with ALS, and here’s what we learned … 1.  Give us a glimpse of a regular day in your life. What are some challenges you face? What do you most enjoy? I need assistance with most things now. I am in a power wheelchair 95% of the day. I will occasionally transfer to a recliner with a lift seat on top the cushion. The biggest challenge I face is constantly changing strategies to remain as independent as possible as the progressing nature of this disease takes away my ability to do even simple tasks. I can no longer speak and I use an iPad with speech software to communicate. I really enjoy getting outside to be around some plants or flowers. I was an avid gardener before ALS, …

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“I am not a quitter, I never have been” – An interview with lung cancer member Jacquie

For Jacquie (Jacquie1961), a business owner and entrepreneur from New Mexico, 2013 was the worst year of her life – she’d lost two beloved pets to old age and then was diagnosed with lung cancer, which soon turned into colon cancer. After rigorous chemotherapy and the adoption of a new dog, Roman, Jacquie joined PatientsLikeMe this past September and has been sharing her positive, never-back-down attitude with the rest of the community. We took time to connect with her recently and this is what we learned… Tell us a bit about your life. After a long career of juggling my own real estate firm and landscaping company, I decided to obtain my esthetician’s license in 2011. In late 2012, I opened a spa for skincare. It was in 2013, as I was building up my new business, that I got my first diagnosis of lung cancer. What I didn’t know was that I also had cancer in my colon that went unnoticed by the first oncologist I had. I was getting sicker by the day, losing more weight, but no one even did any blood work on me or examined me for five months. I asked about chemo and was …

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