Patient Leadership in Research
AiArthritis Voices 360 Main, Full Episode 79
Air Date: November 6th, 2022
This episode is a Step 2 - an initial visit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process.
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, and data banks. They also mention inclusion in conference attendance (learning about research), as well as being part OF the reach team as an equal. 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 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. They plan to expand the conversations - mostly those related to conference attendance and patient research partners - in our spin off "360it" conversations coming soon!
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
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LISTEN TO THE FULL EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION!
All our main 1st Sunday of the month episodes are either an initial "put the topic on the table" episode (Step 2 in our organization's 6-step problem solving process) or a "revisit to the table" episode, where we build on a past show because we have moved forward in developing help, tools, or projects around the issue (Step 5 in our organization's 6-step process).
After each show airs we spin off the conversation into many discussions over various formats, which we now call #360its (new in 2022)!
And now, let's 360it!
The main Sunday episode is where we "put the topic on the table," but it's not where the conversation ends! Now we spin off the conversation into different discussion segments. Below you will find several 360its. Some are videos from the main episode, while others are audiograms (soundbites).
Soon we will be launching additional 360its, which will build on these conversations. We'll hear from patients in the United States, Canada, and Australia who are here to help you through the transition to biosimilars. We are also planning a WATCH PARTY, where we will play back segments of webinars that aim to teach you more about biosimilars - and you'll have your fellow patients at AiArthritis to talk through it all with you! Stay tuned.
SHORT VIDEO CLIPS FROM THE MAIN EPISODE
360it Short Video: Should Patients Attend Conferences?
Attending research conferences are very beneficial for patients because not only can you learn a massive amount but you can also participate to share a patient perspective. Patients are experts in their body and sharing your experiences and knowledge is valuable information to share to medical professionals, researchers and other patients as well. As people living with AiArthritis diseases, we should prioritize attending conferences to learn and share all our lived experiences.
Have you attended research conferences and what has been your experience?
360it Short Video: More Patients Need to be Involved in Research!
It is so important that patients are involved in research! Because so many patients are living with comorbidities, most diagnoses are complex. Therefore, the more people who participate in research the more we can learn. With every research study, we are able to get more answers into the best treatments for the varying AiArthritis diseases. Patient involvement in research is key and whether it is a clinical trial, focus group, survey or data bank, all patients should consider the great benefits of learning how to improve their care.
What are your experiences participating in patient research?
360it Short Video: Why is Diversity Needed in Clinical Trials?
Most people who participate in clinical trials are of white descent. However, AiArthritis diseases affect people of all ethnicities and demographics. More diversity needs to be included in clinical trials and research to help find better solutions for specific diverse groups who can be affected greater by certain conditions. All research studies should include people of different genders, ages and ethnicities because the more knowledge there is, the more robust the findings will be.
How can AiArthritis help increase diversity in clinical trials and research overall?
360it Short Video: What to Consider Before Joining a Clinical Trial
When is it right to participate in a clinical trial and what are some of the important factors you should consider? Before joining a clinical trial, you want to make sure you consider multiple factors such as your continuity of care, lifestyle, mental health and your accessibility. There are many factors you should consider before joining a trial to ensure it is a right fit and will not overwhelm you in the process.
What has been your experience with clinical trials?
SHORT AUDIOGRAMS FROM THE MAIN EPISODE
360it #1 Non-Medication Clinical Trials
You can participate in clinical trials without it being about medication. There are clinical trials on lifestyle, fitness, mental health and different areas to help improve overall patientcare.
360it #2 Comorbidities in Research
People with comorbidities are the ones who really do need to be researched. However, if most patients have comorbidities then the atypical becomes more typical and needs to be included in research studies.
360it #3 Finding Clinical Trials
There are lots of great options to participate in clinical trials and if you are looking for more information on how to join, head over to our website! www.aiarthritis.org/clinicaltrials.
360it #4 Patients in Research
Because so many patients are living with comorbidities, most diagnoses are complex. Therefore, the more people who participate in research the more we can learn.
360it #5 Saying No to a Clinical Trial
You have to weigh out the options before deciding to participate in a clinical trial to ensure you are not disrupting your continuity of care or overwhelming yourself.
360it #6 More Patients = Strong Research
It is important for patients to be involved in research to help advance treatments and medications. Not only is your participation valuable to the research but you can also learn so much about your disease.
Your Co-Hosts & Guests: Who is at the table this episode?
Tiffany Westrich-Robertson
Tiffany 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. For the last several years, she has continued her education in research, including becoming a professional focus group moderator, and translated this experience at our organization to develop award-winning, innovative projects that are taking patient engagement to next levels.
Tiffany has served on several advisory boards, including those to advance patient voices in policy, clinical trials, and precision medicine. In addition to reviewing grants at PCORI and for the Department of Defense, she was the sole patient grant reviewer for the National Institute of Arthritis and Musculoskeletal and Skin diseases from 2015-2018. She currently participates as a Patient Research Partner for OMERACT (Outcome Measures in Rheumatology), co-leads our organizations' international effort to advance patient voices in rheumatology research (the ACTion Council) and has dedicated her professional career to developing other patients to utilize their voices to impact the future of millions.
- Facebook: @TiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
Deb Constien
I live in Sun Prairie, just outside Madison Wisconsin, with my husband Tim of 28 years and 23year old son Jacob. I was diagnosed with Rheumatoid Arthritis at the young age of 13. I am a medically retired Registered Dietitian, graduating college with majors in Dietetics and Biology. I have been a volunteer and representative for AiArthritis for the past 7 1/2 years and really enjoy using my scientific expertise to help in the patient journey. In addition to volunteering for AiArthritis, I also volunteer for the Arthritis Foundation, the Advisory Council for WREN- Wisconsin Research Education Network, Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning. I am also on an OMERACT study group for Shared Decision Making.
- Facebook: @deb.majcherconstien
- Instagram: @debconstien
- Twitter: @debconstien
- LinkedIn: linkedin.com/in/deb-majcher-constien-59945429
- YouTube: debconstien
- TikTok: debconstien
Eileen Davidson
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, Chronic Eileen or can be found being a mom to her son Jacob.
● All social: @ChronicEileen
Kerry Wong
After too many years with doctors who either didn't believe her or couldn't figure things out, Kerry was eventually diagnosed with Fibromyalgia, Sarcoidosis, Small Fiber Neuropathy, Rheumatoid Arthritis, and Sjögren's Syndrome (to name a few). As these conditions took their toll and she became less physically able, Kerry became empowered to use her voice to advocate for herself and for patients like her. Her primary goals are to help other chronic illness warriors know they are not alone in their experience and to help those who care about these warriors to get a better understanding of what that experience entails. Kerry currently volunteers as New York State Advocacy Chair and Platinum Ambassador with Arthritis Foundation, and Patient Ambassador/Peer Mentor with Foundation for Sarcoidosis Research. She has also advocated with the American College of Rheumatology, Support Fibromyalgia Network, and Rare Disease Legislative Advocates, and assisted on numerous projects with International Foundation for Autoimmune & Autoinflammatory Arthritis. . Kerry does all she can to support the arthritis, sarcoidosis, chronic illness, and rare disease communities. She has shared her patient experience in speaking engagements across the country and virtually, and hosts a monthly sarcoidosis Twitter Chat (#SarcChat). Most recently, she has become a columnist with Sarcoidosis News, sharing her experience and insights, inviting others to Float Like a Buttahfly with her.
● Website: https://bit.ly/FloatLikeAButtahfly
● Facebook: https://www.facebook.com/floatlikeabuttahfly
● Instagram: @buttahflyk
● Twitter: @buttahflyk
● LinkedIn: https://www.linkedin.com/in/kerrylwong/
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!
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