Episode 53: FDA Public Meeting Opportunity - Patients ”at the table”

This week join your patient co-host Danielle Dass as she reports back on her experience attending an American Food and Drug Administration (FDA) Public Meeting on behalf of the International Foundation for Autoimmune and Autoinflammatory Arthritis. The meeting was intended to gather information from patients, medical professionals, and industry personnel about the accessibility and utility of safety communications regarding medical devices to better inform FDA practices.

The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis patient community. This means sometimes we send representatives to participate in events hosted by regulatory agencies like the FDA or the European Medicines Agency (EMA). In this episode, Danielle will explain how you can get involved in this meeting and how you can participate in future opportunities.

After listening to the episode, if you would like to view the FDA safety Communications about medical devices or any other products, you can do so here: FDA Safety Communications

If you would like to leave feedback or comment on the safety communications linked above or any of the issues from the meeting discussed in the episode, please visit FDA Public Comment by January 19, 2021.

 

Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!

 

If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.

JOIN TODAY!

 

AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).

 

Show Notes: Episode 53 – “FDA Public Meeting Opportunity - Patients "at the table”

 

00:53 - Danielle welcomes listeners

01:05 - Danielle is a patient living with Rheumatoid Arthritis and Axial Spondyloarthritis

01:34 - Today’s episode is about Danielle’s experience participating as a panelist in a public meeting for the American Food and Drug Administration (FDA) about safety communications regarding medical devices

02:08 - AiArthritis seeks to center the patient voice in all conversations in the medical community that impact patients living with AiArthritis Diseases

02:21 - AiArthritis patients often use both implanted and assistive medical devices

03:39 - AiArthritis will use AiArthritis Voices to put stakeholders in touch with volunteers who are interested in participating in things like conferences, public meetings, and other events

05:34 - Danielle talks about the experience of participating as an equal stakeholder and encourages other patients to get involved

09:03 - AiArthritis was the only organization that sent a representative to speak for adult patients at the FDA meeting

09:18 - Danielle explains the purpose of the meeting and what types of information the FDA is seeking

12:23 - The FDA is particularly interested in getting safety information communicated to people who do not have access to the internet, but they did not invite anyone to the panel who could speak to that

13:23 - Danielle explains how listeners can submit comments that will be read by the FDA about safety communications

15:32 - If you are a patient or the parent of a juvenile living with an AiArthritis disease, please join us at aiarthritisvoices.org or visit aiarthritis.org/aiarthritisvoices to continue this conversation with us

15:57 - Danielle invites listeners to connect with us on all social media platforms @ IFAiArthritis or email us @ podcast@aiarthritis.org

16:06 - Danielle thanks listeners and asks everyone to consider supporting the show by donating at aiarthritis.org/talkshow