6 posts tagged “collaboration”

“We are all connected”: Check out this new video starring the 2018 Team of Advisors

Posted 7 months ago by

Have you had a chance to meet the 13 members selected to join the 2018 Team of Advisors? Get a glimpse of the dynamic group in this new 2-minute video, and keep an eye on the PatientsLikeMe newsfeed and Facebook page for their individual videos and stories.

This group will be collaborating with us in the next year to offer feedback on new research and product development, to advocate on behalf of patients, and provide real-world perspectives to PatientsLikeMe and our partners.

Say hello to the team! From left to right in the screenshot above:

(Back row)

Marcia Holman (@marcia_holman), living with multiple myeloma and breast cancer

Rich Pollock (@rcpollock), living with ALS

Rosie Stambaugh (@ClairHart), living with major depressive disorder and fibromyalgia

LaKeisha Parnell (@Hope4ull2), living with epilepsy

Susan Tomasic (@SusanT318), living with rheumatoid arthritis

Kip Edwards (@Kip_Edwards), living with multiple sclerosis

Paul Tavano (@PaulT), living with ALS

Elizabeth Asdorian, (@e_sf) living with multiple sclerosis

Bernadette Mroz (@yellsea), living with Parkinson’s disease

Alysia Taylor (@stormyND), living with bipolar disorder

(Front row)

Christine Von Raesfeld (@Cvonraesfeld), living with lupus

Jeanette Alston-Watkins (@JeanetteA6872), living with lupus

Melinda Lowery (@MelindaAnn), living with rheumatoid arthritis

This group is available as a resource to the rest of the PatientsLikeMe community and you’ll be hearing more from them throughout the year. Join PatientsLikeMe today to connect with them and 600,000+ other members!

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Sally Okun explains the new research collaboration with the FDA

Posted June 16th, 2015 by

Yesterday, we announced a new research collaboration with the U.S. Food and Drug Administration (FDA) that will explore how patient-reported data can lead to new insights about drug safety. It’s the first time the FDA will analyze patient-generated data for pharmacovigilence (aka drug safety).

But we’re no strangers to drug safety. Check out some of the previous work the community has helped to drive:

To learn more about this new (and unprecedented) collaboration, we talked to our very own Sally Okun, Vice President of Advocacy, Policy and Patient Safety.

What will this collaboration do?
Patients’ lives and well-being often depend upon medical products approved and regulated by the FDA. But most of the information we see on safety labels comes from clinical trials, which aren’t typically representative of the actual populations of patients who will take the medication. Working with us, the FDA will be able to see the real-world impact of taking medications over time, which can help identify benefits and risks earlier. The FDA isn’t just talking about patient-centricity; they are partnering with us to work directly with patients, and give them a collective voice as part of the FDA’s surveillance system.

How does the FDA normally hear about side effects?
Right now the FDA uses a voluntary reporting system consisting of individual case safety reports, the majority of which are submitted by healthcare professionals and patients to drug product manufacturers, who then are required to report them to the FDA. Our data are different in that the information is generated by patients themselves, and provide real-time insights about what its like to use medical products over time, like tolerability of the drug and factors that may influence taking the drug as prescribed.

When did PatientsLikeMe’s start gathering information about side effects and adverse events?
We’ve actually been collecting information about patients’ experiences with treatments, including patient-attributed side effects, since we launched the website in 2006. In 2008 we took steps to formalize adverse event reporting by developing a customized version of the FDA’s MedWatch tool for use in a pilot project with our MS community. The pilot set us on a path to develop our future drug safety functionality. By 2009 we had created a fully integrated, standards-based drug safety platform, the first on social media. It enabled industry partners to meet their regulatory obligations.

What’s the future?
It’s pretty exciting! The patient experience can more deeply inform the way medications are regulated. And patient-reported data can ultimately have a greater impact on the way that drugs are developed. This collaboration can lead to all of that.

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