Episode 8 Where can patients use their voice to impact change? EVERYWHERE!

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.

 

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).

 

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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  - IFAA is recruiting patients to join AiArthritisVoices.org to get involved