AiArthritis Voices 360 Talk Show
Education
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).
Be sure to check out our top-rated show on Feedspot!
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
Episode 97 - World AiArthritis Day
Episode 96 - Social Wellness with an AiArthritis disease
Episode 95 - Volunteering with AiArthritis
Episode 94 Rheumy Rounds Rewind: Improving Doctor and Patient Communication During Office Visits
Episode 93: Reproductive Health and AiArthritis Diseases
#360it: Medicare Drug Price Negotiation: How Will it Affect Patient Access?
Episode 92 Breaking Research: Pharma & Non-Pharma 2023
Episode 91: AiArthritis Voices 360 REWIND - Distinction Between Autoimmune and Autoinflammatory diseases
Episode 90: Why Won’t They Diagnose Me?
Episode 89: Surgery with an AiArthritis Disease
Episode 88 Biosimilars - Interchangeability & Switching 2023
Episode 87: AiArthritis Rant Discussions - Inspired by Am I the @$$hole
Episode 86 : Organ Involvement: Disease Symptom or Comorbidity?
Episode 85: Elevator Pitches to Explain AiArthritis Diseases
Ep 84: I’m a Mystery Patient, Now What?
Episode 83: Improving Communication Throughout the JIA Journey
Episode 82: AUTO + Autoinflammatory Arthritis: Diagnosis, Please!
Episode 81 RheumyRounds: The Good, The Bad & The Ugly Pt. 2- Improving Office Visit Communication
Episode 80 RheumyRounds: The Good, the Bad and the Ugly - Improving Office Communication
Episode 79 : Patient Leadership In Research
Create your
podcast in
minutes
It is Free
Navigating Life After 40
Teaching Learning Leading K-12
Regenerative Skills
The Jordan B. Peterson Podcast
The Mel Robbins Podcast