2 posts tagged “e-patient advocate”

“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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E-Patient Dave’s Top Internet Resources

Posted February 23rd, 2012 by

Blogger, Author, Keynote Speaker and Cancer Survivor E-Patient Dave, Also Known as Dave deBronkart

We first introduced you to E-Patient Dave – a well-known blogger, author and keynote speaker in the healthcare space – last summer.  Given our similar views on many health matters, we see a lot of E-Patient Dave at the conferences and events we attend.  Case in point, our President and Co-Founder Ben Heywood was on a panel with him at the Military Health System Conference just a few weeks ago.

For this particular “high-speed” panel, each speaker was given just 12 minutes to share their story.  So what did E-Patient Dave do?  Exactly what any good digital age citizen would:  he covered the important things and then directed people to his website to find all the related websites and resources.  Given that he’s a cancer survivor and e-patient advocate who believes in “letting patients help,” we were curious what links E-Patient Dave recommends for others who are seeking to take control of their health and join the e-patient movement.

Here’s a sampling of Dave’s top resources along with a brief description:

All About the E-Patient Movement, and Its Founder, Dr. Tom Ferguson (“Doctom”)

Other Resources for the Budding E-Patient

(See Dave’s full list of resources here.)

What about all of you e-patients out there?  Do you have any Internet resources that other patients should know about?  Share your own recommendations in the comments section.

p.s.  In December, E-Patient Dave stopped by our office to talk to the team during our weekly Journal Club luncheon.  Stay tuned for a podcast of what he shared with us.