39 posts tagged “patient advocacy”

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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Creating communities, on and off PatientsLikeMe

Posted November 28th, 2017 by

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 to transform lives

When Nola, living with progressive MS, was having trouble making her bathroom handicap accessible, Gary decided to jump in and help. He used his connections at Home Depot (where he worked) to help Nola regain her independence, her ability to clean herself, and most importantly, her dignity. Check out photos of her remodeled, handicap accessible bathroom and rest of their story on the blog.


Meeting members where they are

Earlier this year, John started a Facebook group to live-stream pulmonary fibrosis (PF) support group meetings and conferences. His hope is that the group “can help with the feelings of isolation and loneliness, plus provide valuable information and hope for the future.”

Unwinding in off-topic threads

Members use off-topic threads to play games, celebrate life and each other, and to take a break from the stress of living with a chronic illness. Here’s a few popular threads:

  • A thread to celebrate us! Going strong since 2010, this thread was created as a “happy place” for MS members looking for positivity and support.
  • In the Parkinson’s disease forum, members have swapped lots of jokes and pics of their artwork for almost a decade.
  • Members of the mental health community have kept their “Three word story” thread going strong for seven years, and shared their “Goals for today” with each other for even longer.
  • Potpourri” and reading recommendation threads in the ALS forum have been go-to places to share about non-ALS stuff.

Are you part of the PatientsLikeMe community? Join to add your voice and create your own community.


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