86 results for “"the patient voice"”

“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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Loud and clear: The patient voice on the ACA

Posted March 2nd, 2017 by

Have you had chance to check out that poll where 2,000+ PatientsLikeMe members shared their views on the Affordable Care Act (“Obamacare”)? It was the largest patient poll on potential changes to the health care law, and several media outlets are now listening up.

A recent CNBC article called “The human side of the Obamacare debate” featured quotes from those who took part in the poll. Here’s a glimpse of the patient perspective:

“Raising the age of dependent coverage to age 26 was a lifesaver for our daughter. ACA is not perfect as there are stories of those who’ve hated it and it cost them more money in the long run, but there are just as many positive stories of all the people the ACA helped. Health care in this country is big business and complicated. The ACA didn’t uncomplicate it, but it helped many more Americans have affordable health insurance. It is a mistake to just repeal it without anything to take its place.”

  • Jeanne of Jackson, WI, living with fibromyalgia, depression, generalized anxiety disorder and primary biliary cirrhosis

 

ACA patient poll by PatientsLikeMe

2,197 PatientsLikeMe members weighed in on the ACA.

 

“I lost my health insurance because my husband was laid off. Then, I had Medicaid for five months, but that was taken away because my husband made ‘too much’ on unemployment which wasn’t much. This doesn’t take into account our other bills like keeping a roof over our heads. I am in the middle of a disability case. I can’t afford insurance. If I start having seizures again from my [traumatic brain injury] or other issues, I am screwed financially. I don’t have any savings; I can’t work. I am borrowing money from credit cards just to make ends meet.

And to insist that I have insurance (the lowest quote I received was $270 per month) with no financial way of paying and getting fined because of that is an insult. I have been paying into a system that is supposed to help when I need it, but no. This has hurt me and so many others.”

  • Shawn, Lakewood, CO, living with severe traumatic brain injury

Thanks again to all who participated and helped elevate the patient point of view. Let’s keep the dialogue going, together.

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