Episode 79 : Patient Leadership In Research

Patient involvement in research is key to developing knowledge and understanding around the many AiArthritis diseases. As a person living with AiArthritis diseases, there are lots of ways you can get involved with patient research such as clinical trials, surveys, focus groups, data banks and more. You can even elevate your participation through conference attendance and being part of the research team!

In this month’s episode, we join our co-hosts Tiffany, Deb, Kerry and Eileen, all living with AiArthritis diseases, as they discuss the importance of patient involvement in research. During this episode, the co-hosts will share their own experiences in patient research, how inclusion criteria impacts the ability to participate, what factors to consider before joining and how to find patient research opportunities. Join us in this episode as we discuss clinical trials and start the important conversation of patient research.

 

 

Episode Highlights: 

• Patient’s Experiences in Clinical Trials
• Inclusion & Exclusion Criteria For Clinical Trials
• Why it is important for patients to be involved in research 
• How do you find patient research opportunities 
• What to consider before joining patient research 
• Types of patient research to participate in

 

Links Mentioned: 

www.aiarthritis.org/clinicaltrials

www.clinicaltrials.gov 

Meet Our Co-Hosts:

• Tiffany Westrich-Robertson is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.

Connect with Tiffany:

• Facebook: @TiffanyAiArthritis
• Twitter: @TiffWRobertson
• LinkedIn: @TiffanyWestrichRobertson

 

• Deb Constien is a medically retired Registered Dietitian and a Representative for the AiArthritis with Rheumatoid Arthritis. Deb is also on the Advisory Council for WREN- Wisconsin Research Education Network and a Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning.

Connect with Deb:

• Facebook: @deb.majcherconstien 
• Instagram: @debconstien
• Twitter:  @debconstien

 

• Eileen Davidson is a rheumatoid arthritis patient advocate from Vancouver Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research - Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador, among others. When not advocating she is writing about her experience with arthritis through Creaky Joints, Healthline or Chronic Eileen.

Connect with Eileen:

• Twitter:  @Chroniceileen

 

• Kerry Wong was eventually diagnosed with Fibromyalgia, Sarcoidosis, Small Fiber Neuropathy, Rheumatoid Arthritis, and Sjögren's Syndrome (to name a few). Kerry is a volunteer at New York State Advocacy Chair, Ambassador with Arthritis Foundation, and Patient Ambassador/Peer Mentor with Foundation for Sarcoidosis Research. Kerry does all she can to support the arthritis, sarcoidosis, chronic illness, and rare disease communities

Connect with Kerry:

•     Instagram: @buttahflyk 
•     Twitter: @buttahflyk 
•     Facebook: @floatlikeabuttahfly

 

 

Donate to Support the Show: https://www.aiarthritis.org/donate 

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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!