3 posts tagged “Laura Sanscartier”

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

Posted December 7th, 2017 by

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 my involvement in the future of health care.”

Sally Okun (PatientsLikeMe VP of Policy & Ethics), who organized and attended the event, said “Dinner conversations were provocative, candid, inspiring, and challenging. Overall there is great interest in elevating patient data to the level of evidence. PatientsLikeMe is actively engaged in innovative collaborations with regulators, policy makers and researchers to help them better understand the value and unique characteristics of data generated by patients.”

Members take a stand: The 7 essentials for a health care plan

Repeal? Replace? Revise? Following the twists and turns of the debate about health care this past year might have felt riding a roller coaster. (Need a refresher? Check out this timeline that breaks down the healthcare legislation efforts). But, according to a PatientsLikeMe poll, patients are largely unified on what a strong health care policy looks like.

2,755 members – from all 50 states and across party lines – added their voices, and at least 95 percent agree on the top 7 priorities of a strong health care policy (see the highlights of the poll results and the latest trends in patients’ opinions.)

Taking action

When we released the PatientsLikeMe healthcare poll results this past spring, the Republican majority in Congress was trying to pass the American Health Care Act (AHCA), which would’ve repealed most of the Affordable Care Act, or “Obamacare.”

Many members didn’t just take part in the poll, they went one step further. They shared the poll results — showing the largely united patient voice — along with their personal views in messages to their members of Congress through this Take Action page.

What’s the one change you think is most needed in the health care system? Are you a PatientsLikeMe member? Head to the forum to add your voice.

 

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Team of Advisors member Laura takes over the PatientsLikeMe Instagram for World Mental Health Day

Posted October 12th, 2017 by

In honor of World Mental Health Day, we asked PatientsLikeMe member Laura (thisdiva99) to take over our Instagram feed for the day. Laura is a professional opera singer, Massachusetts native, a member of the PatientslikeMe Team of Advisors, and is living with bipolar disorder. She gave us a glimpse into a day in her life, Check out the images and captions below to see what she shared.

Living with bipolar
Hello my Instagram compatriots! Laura here. Some people start the day with hearty oatmeals, or eggs fortified with kale. I start my day with a champion #bipolar breakfast of vitamin supplements and mood stabilizers… then I can eat my own breakfast 30 minutes after. For me, supplements are super important to incorporate with my meds. Talk to your doc about it to see if they could work for you!
Living with bipolar
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With my trusty steed Corolla, I conquer the day’s doctor’s appointments. On a good day, I can keep my ride in the driveway; on other days I travel to multiple towns/cities to see psychiatrists, therapists, endocrinologists, and the like. I also incorporate a yoga class or visit to the gym as I can. For me, treating the body as a whole is the key to moving toward a stable feeling.
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Living with bipolar
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Meds require rehydration, therapy requires new worksheets to be completed, my funny bone requires Dwight Schrute, and my inner-warrior requires Big Papi by my side!
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Living with bipolar
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Books act as a balm for my weary, ever-battling soul. On depressive days, I cling to romance novels, especially @LisaKleypas! On warrior days, I move between science texts and adventure series (LOVE the Fever series by @karenmariemoningofficial). There’s always a new cookbook in the pile, as I try to find new ways of eating that may not make my brain and body hurt so much.
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Living with bipolar
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The subject of my final post is all about my rock. My husband is my rock, my love, and my protector. He has seen me at the best and worst points of my life. He’s taken me to the hospital when I was suicidal. He’s watched me perform with world-famous orchestras. He’s quietly sat in the corner of a James Taylor rehearsal until I was finished singing, because I couldn’t drive and he was my ride. (Hooray for ECT!) Ultimately, he is there regardless of how my illness manifests. We are a team of sass and strength, and I am so lucky to be a part of it. I hope you’ve enjoyed this little glimpse into a day in my life. Please go to www.coffeeandlithium.wordpress.com for more! Be well!
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