88 results for “"the patient voice"”

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

Posted April 28th, 2017 by

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.

Parkinson's Disease patient

Lisa Cone, PatientsLikeMe member living with PD

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 Fee Act, which the U.S. first enacted in 1992 to allow the FDA to collect fees from pharmaceutical companies to help fund the FDA’s drug review and safety monitoring processes. PDUFA VI, the pending update to the legislation (up for renewal in September 2017), would require drug developers to include more of the patient perspective in the early stages and overall process of drug development. (Read more about it here.)

Maria Lowe

Maria Lowe, Pharm.D., health data and drug information clinical specialist at PatientsLikeMe

Lisa says that the FDA has been trying to drive a higher level of patient participation in the trial process and the drug approval process. New leadership and budget changes in Washington could shift or delay the FDA’s focus on patient-centeredness, but Lisa still has a message for pharmaceutical industry leaders:

“I urge you not to confuse the value of partnering with patients with the requirement to partner with patients.”

 

But she adds that low participation in trials often stems from problems in the study design from the get-go. Involving patients early and often in trial design and drug development can pay off big time, Lisa says. “The time and resources it takes to bring a single new therapy to market are significant,” she says. “Because of this investment, failure to assess the needs of patients early in the development process can mean marginal success or frankly disastrous results when taken to market.”

On becoming a patient thought leader, plus a few pointers

Lisa had professional experience in the healthcare field — before leaving the workforce, she was an executive responsible for understanding the business of and policies affecting healthcare providers.

“I do not, however, believe that these experiences are required to be an effective advocate. I believe having knowledge of your condition beyond your personal experience is the primary requirement, which is not complicated,” she says.

On PatientsLikeMe, 23,512 patients say they’re interested in advocacy. Lisa’s advice? Find a “role that most suits your gifts,” such as fundraising, lobbying or speaking. She also puts her her physical and emotional health first. “This means taking time to relax, play with my dog, visit with friends and family and getting physical activity,” she says. “I’m not always successful in this endeavor as I have a tendency to ‘over volunteer.’”

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