patient advocacy

Advocacy 101: See our new guide!

Interested in getting into advocacy for your health condition community this year? Raising your voice to boost awareness about your condition or the reality of being a patient takes courage. Yet it’s pretty simple to get started with advocacy, so together with members of our Team of Advisors (a team of highly active members and advocates in their condition communities), we’ve put together a new guide called “Advocacy 101.” See/expand and print the guide here! More than 30,000 PatientsLikeMe members indicate that advocacy is one of their interests on their profile. Join PatientsLikeMe or log in now to find and connect with these members here (filter the list to show others with your same condition using the “Condition” search field in the left-side menu). Have any advocacy pointers you’d like to add? Add a comment below or log in to share with the community here!

Defining “good” health care: 2 new studies reveal patient perspectives

Do you feel you’re getting the best possible care from your doctor? In two recent studies, PatientsLikeMe members answered this question and shared their perspectives on the health care they’re receiving. The results show that while patient opinions about care and provider performance vary according to condition, diverse patient groups agree on the top factors that define “good” care. Here’s the full scoop… Poll results: Good care is harder to get for some conditions Last month, 2,559 PatientsLikeMe members took part in a 6-question poll about doctor-patient relationship and what it means to get “good care.” The results suggest that patients with certain conditions, especially those living with fibromyalgia, PTSD and MDD, are less satisfied with their care. The poll also found that patients with these conditions are less likely to: Believe their provider has fully explained treatment options. Just 47% of fibromyalgia and PTSD patients and 53% of MDD patients agree their provider has done so, compared to 63% of patients living with ALS, MS and Parkinson’s disease. Report that they are receiving the best possible health care for their condition. Only 40% of fibromyalgia patients, 49% of PTSD patients and 45% of MDD patients believe they are receiving the best possible care, …

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“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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Life-changing second opinion stories: “I decided to get a second and third opinion…”

Stories showing the importance of second opinions have been popping up in the media and on PatientsLikeMe. Check out the recent news headlines, hear a remarkable story of a PatientsLikeMe member who received a life-saving lung transplant after getting a second (and third) opinion, and share your own experience of piecing together your health puzzle. Extraordinary second opinion stories The Washington Post recently featured two powerful pieces related to second opinions — one about a man who got a second opinion at his mother’s urging (and received life-saving treatment for metastatic testicular cancer), and another about a woman who did not seek one and underwent unnecessary major surgery (removing her breasts and uterus). “I am damaged for the rest of my life,” the woman said. PatientsLikeMe member Theresa (Pipersun) recently shared her “whirlwind experience” and remarkable second opinion story in the forum. After two bouts of severe pneumonia earlier in 2017, a CT scan in June confirmed Theresa had a serious lung condition, idiopathic pulmonary fibrosis (IPF). While the diagnosis was correct, her doctors did not believe her condition was as advanced as she suspected. “My pulmonologist was terrible,” she says. “He would not prescribe me oxygen, and would not sign a referral for pulmonary …

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Amplifying the patient voice on health care: Real people, real change

In 2017, patients like you participated in research, attended conferences and took action on important health care changes. Check out some of the ways the PatientsLikeMe community is raising a unified voice on health care. “Patients are a key piece to healthcare’s puzzle” Back in May, PatientsLikeMe, the Duke-Margolis Center for Health Policy and Arc Fusion teamed up with strategic thinkers and doers from across the health care spectrum— from clinicians, payers and policy makers to FDA regulators, journalists and attorneys. The goal of the event was to discuss how real-world health data, generated by real people like you on PatientsLikeMe, can shape decision making in the health care industry. PatientsLikeMe members attended the event including Laura, Geof, Jim, Letitia, Gary, Lisa and Allison. After an evening of frank conversation, eclectic talks and performance, Laura wrapped up the event with a moving rendition of Ragtime’s Make Them Hear You. Reflecting on the event she said: “Patients are the key piece to healthcare’s puzzle. Being a part of the Arc Fusion program and dinner was invigorating and so rewarding, as people from all aspects of healthcare, including patients like me, came together to place that puzzle piece. I can’t wait to continue …

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Creating communities, on and off PatientsLikeMe

More than half a million members, connecting 365 days a year, sharing countless health insights and words of support. Communities like this one are built on communication. And every day, patients like you are finding new ways to connect and enrich your community. From in-person meet-ups to live-streaming support groups and off topic threads, patients like you are finding creative ways to build communities. Check out some of the ways connections are growing in and out of the forum. Taking it offline What started as a simple chat between friends in the forum evolved into something much bigger. Members from the multiple myeloma community on PatientsLikeMe decided to take their friendship out of the forums and into real life. Marcia (marcia_holman), Dennis (DennisIvan), Paul (paulatsea) and Lee (Dapylil), along with spouses and grandchildren, got together and discussed life with multiple myeloma, their “new normal” and shared the highs and lows of the journey together. In Marcia’s words: “It has been a delight to get together and meet someone you have just been corresponding with on line. We can put a face to them. You get to know their personalities and they become “forever friends!” Check out the full story.   Connecting …

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Working with a condition: Your rights and options for sharing with your employer and taking leave

Have you ever struggled with managing your health condition(s) while holding down a job? Or worried about missing too much work because of your unpredictable symptoms? Team of Advisors member Hetlena (TheLupusLiar) is living with lupus and is very interested in the topic of balancing work with a chronic health condition. She helped us develop these infographics, which apply to people with any medical condition. Sharing about your diagnosis at work Do you need to tell your employer? What can and can’t they ask you about your health? What role should your human resources department play? Find out in this infographic. (If you want to go deeper into these topics, here’s a good resource with answers to more questions like this.) Work leave rights, at a glance This infographic helps explain work leave under the Family and Medical Leave Act (FMLA) and the American Disabilities Act (ADA) – and how they can cover you when going to work isn’t possible because of your condition. If you’re looking for more than an intro to the FLMA and ADA, you can find the full details here. On PatientsLikeMe More than 51,000 members have listed “working with my condition” as an interest on …

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“I promise not to look upon myself with the scornful eyes of my past” – PatientsLikeMe’s Becca shares her promise

Becca Getto is an Associate Product Manager at PatientsLikeMe, and is recovering from an eating disorder. During her time in Monte Nedo Laurel Hill treatment program, she wrote a poetic and moving promise to herself, and in it she shares her past struggles and hopes for the future. Becca is more than her condition: she’s kind, caring, passionate and ambitious. Here’s her promise… I promise to walk through life with my bare feet. I promise to feel the blades of grass tickling my soles, the warm grains of sand between my toes, the sharp edges of tiny pebbles beneath my feet. I promise to keep moving forward, to keep walking over the damp earth of a dirt trail, over hot pavement and uneven ground, through freezing snow, through overgrown weeds, through thorn bushes, through brambles and brush. I promise to splash in puddles and jump into piles of autumn leaves. I promise to no longer hide my toes, to no longer be ashamed of my imperfections, blemishes and flaws. I promise to paint my toes only when I want to use their hue as a display of self-expression rather than an attempt to cover up reminders of my past embarrassment …

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#MoreThan multiple sclerosis: Guest blogger Cathy Chester’s journey as a writer, mom, advocate and optimist

As part of our ongoing #MoreThan series, we’re continuing to highlight patients’ stories of all the ways they’re more than their diagnoses. Here, Cathy Chester – blogger, wife, mother and advocate – shares her diagnosis story and how she’s much more than MS. When I was in my 20s I was thrilled to work for a large publishing house in Manhattan. It was an exciting dream job but I was competing against other recent college graduates who were all jockeying for promotions. To meet the challenge, I needed to be quick on my feet and look polished. I arrived early each morning wearing a beautifully tailored business suit and high heels. I could taste that promotion. But fate stepped in when I least expected it. My 2-inch heels gradually became unbearable to walk in and I started to struggle to maintain my balance. I finally lost the battle one day when my right shoe slipped off my foot without notice. The growing numbness in my legs and feet masked the loss of my shoe. It was time to see a doctor. After a CAT Scan, spinal tap and MRI I was diagnosed with Multiple Sclerosis. I am more than my …

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Author, Reiki master, inventor, husband: Guest blogger Karl Robb shares why he’s #MoreThan Parkinson’s disease

Inspired by our new #MoreThan video series, patients have been speaking up about what makes them more than their diagnoses. Below, Karl Robb — blogger, author and advocate — shares his #MoreThan story about living with Parkinson’s disease. My name is Karl Robb. I have been blogging about Parkinson’s disease for over 10 years on my site, www.ASoftVoice.com. I was diagnosed with Parkinson’s when I was 23 years old, but I showed symptoms as early as age 17. On a rare occasion, I would encounter a resting tremor, often triggered due to stress or fatigue (after a tennis match). It took me at least nine doctors and six years for me to receive the diagnosis and to begin the medical treatment to improve and to deal with the revelation of my condition. The progression of my symptoms have been slow and gradual. I am currently 50 years old. Most of my 50 years have been spent learning that I had Parkinson’s disease (PD), how to deal with it, learn from it and to try to keep it from advancing as best as I possibly can.   Parkinson’s disease may have slowed me a little, but I continue to write, work on …

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