12 posts tagged “healthcare”

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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We the Patients: New PatientsLikeMe poll finds a unified voice on a U.S. health care plan

Posted June 14th, 2017 by

Repeal? Replace? Revise? While politicians have spent months debating the details of a U.S. health care plan, a recent poll of 2,755 PatientsLikeMe members has found that patients are largely aligned about components of a strong plan for the country.


“Despite the partisan divide in Congress about what should be included in a health care plan there is a singular voice in patients, who are agreed across party lines on the essential foundation for any plan.”

— Sally Okun, PatientsLikeMe’s vice president of Advocacy, Policy and Patient Safety


Patients with a variety of conditions and from all 50 states (plus the District of Columbia) participated in the poll May 4-9. The poll launched on the same day that the U.S. House of Representatives voted (217 to 213) to narrowly pass the American Health Care Act (AHCA, sometimes nicknamed “Trumpcare” or “Ryancare”), which would repeal much of the Affordable Care Act (ACA, or “Obamacare”). The AHCA bill is now with the Senate for deliberation, revisions and possibly a vote in the coming days.

Here are some highlights from the poll’s findings and the latest trends in patients’ opinions.

PatientsLikeMe ACA patient poll

The new (May) poll was a follow-up to a January 2017 poll where PatientsLikeMe members weighed in on the ACA/Obamacare. Comparing the responses of those who took both the January and May polls, patients are increasingly in favor of modifying rather than replacing the ACA/Obamacare. Fewer patients believe the ACA “needs a major overhaul” or should be “totally eliminated.”

The 7 must-haves

Patients speak out on health care law

Patients are united — 95% or more of respondents agree that these elements should be included in a national health care plan to “provide essential help to the most people.”

Should states have a choice?

Nearly half (48%) disagree that states should be able to “opt out” of parts of a national health care plan while more than one-third (35%) agree with it. But only 22% agree that their own state should opt out.

Patients speak out on health care law

The strongest opinions about opting out were split along party lines, with more Democrats than Republicans believing states should not be allowed to opt out.

Take action: How to raise the patient voice in 3 steps

Want to share the patient voice with your members of Congress? Click here to go to a “Take Action” page with 3 simple steps to spread the word about the poll results and add your own perspective.


“Our hope is that by amplifying the voice of those with the most experience with our health system, we will influence the Senate to construct the best plan for all Americans.”

— Sally Okun

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