Where Can Patients Have a Voice? EVERYWHERE!
AiArthritis Voices 360 Full Episode #8
Air Date: January 5, 2020
Welcome to AiArthritis Voices 360. This week, join your host, Tiffany, as she and co-host Suz Schrandt talk about the variety of opportunities that exist for patients who want to become active in medical research, education, and advocacy. Regardless of your background, there are opportunities for you to get involved and help shape the future of medicine and science regarding autoimmune and autoinflammatory arthritis. Your voice matters, and you can make a difference. Pull up a chair to find out how to get started and where your journey could take you!
LISTEN TO THE EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION!
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Pull up your seat at the table
Now it's YOUR TURN to join the conversation!
What do you think about this episode?
We want to know what you think! By continuing the conversation with your opinions and perspectives - we all get a better understanding of the problems facing our community. Better yet, through these conversations we can start working and developing solutions.
We mean it when say 360. Not only do we want your input anytime and anywhere, but we also are eager to see where the conversation will take us. So please, "pull up a seat at the table" and let's start talking!
Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)
Continue the conversation in our own AiArthritis Voices 360 Talk Show Group!
Pull up a seat and join the conversation on the topic from today and past episodes. You may even get an opportunity to talk directly with the co-hosts and any episode guests!
The AiArthritis Voices Program
Our AiArthritis Voices 360 Talk Show is just a piece of larger program - the AiArthritis Voices Program.
AiArthritis Voices is our 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.
If you want to get more involved, and see more of the opportunities we have for you (and all stakeholders) please check out the AiArthritis Voices Program. Unite with others around the world to talk, learn, and connect.
Show Notes: Episode 8 – “Where Can Patients Use Their Voice? Everywhere!”
00:53 – Tiffany welcomes listeners and co-host, Suz Schrandt
01:12 – Suz is the Senior Patient Engagement Advisor for the Society to Improve Diagnosis in Medicine (SIDM) and Founder of a patient engagement initiative, ExPPect
01:31 – Suz explains the mission of ExPPect
04:39 – Suz explains how she got involved with patient engagement
07:47 - Tiffany explains how she started working with PCORI (Patient-Centered Outcomes Research Institute)
09:55 - Patient research partners are equal members of research teams
10:22 - There are many opportunities to get involved in patient-centered research
11:00 - Patients can become ambassadors for PCORI
13:00 - European Patients Academy on Therapeutic Innovation, the European Patients Forum, and the Innovative Medicines Initiative are all European resources for getting involved as a patient researcher
14:00 - International Society for Pharmacoeconomics and Outcomes Research (ISPOR) hosts patient representative round-tables all over the globe
15:56 - The US Food and Drug Administration (FDA) also has opportunities for patient involvement in the development and approval process for new medications
17:06 - Patients can partner directly with pharmaceutical companies to conduct research
19:03 - Most of these opportunities include some preliminary training to equip patients with the skills they need to fully participate
20:56 - The US does not have a singular Health Technology Assessment body like many other countries.
21:37 - Patients in countries that have an HTA body can serve as co-reviewers to help determine which therapies will be funded
24:08 - Instead, the US has the Institute for Clinical and Economic Review (ICER) which has some opportunities for patient participation
25:03 - Patients can be Advocates for the American College of Rheumatology
25:37 - Patients can provide input when medical specialty organizations are developing their clinical practice guidelines
27:05 - Patients can serve as Medical Educators by joining local hospital patient and family advisory councils
29:51 - Patient Focused Medicines Development (PFMD) has a repository of people, projects, and best practice guidelines for patient engagement called SYNaPsE
31:13 - Tiffany thanks Suz for coming onto the show to talk about patient engagement opportunities
31:26 - Tiffany thanks listeners and invites everyone to visit www.aiarthritis.org/podcast to access resources and provide your thoughts on this topic
32:00 - Our organization is recruiting patients to join AiArthritisVoices.org to get involved
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.
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).
Be sure to check out our top-rated show on Feedspot!
Your Co-Hosts & Guests: Who is at the table this episode?
Suz Schrandt
Suz Schrandt is a patient diagnosed decades ago with Juvenile (Rheumatoid, now called Idiopathic) Arthritis and patient engagement advocate with a health and disability law background. She recently launched a new patient engagement initiative called ExPPect and is currently serving as the Senior Patient Engagement Advisor to the Society to Improve Diagnosis in Medicine. Schrandt previously served as Director of Patient Engagement at the Arthritis Foundation, and as Deputy Director of Patient Engagement for PCORI. Her career spans work in health reform, bioethics, and genetic discrimination, as well as a long history in patient-led clinical training. Schrandt is one of nine voting members on the FDA’s inaugural Patient Engagement Advisory Committee, the Chairperson for the International Society of Pharmacoeconomics and Outcomes Research North American Patient Roundtable, and has been an invited speaker at numerous US and international conferences. Schrandt received her law degree from the University of Kansas and has co-authored multiple publications on health policy and the value of patient engagement.
More about ExPPect: "Patient engagement should be the expectation and not the exception. ExPPect is like a 'do-tank' if you need to get patient engagement done, or you need to understand what patient engagement is, or how to involve patients in important work in healthcare research or clinical education training."
Society to Improve Diagnosis in Medicine is working to create a world where no patients are harmed by diagnostic error.
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