Part of our work in Precision Medicine/Treat 2 Target Research
AiArthritis Voices 360 Full Episode 42
Air Date: August 23, 2020
Join TIffany and Rick as they address the challenges involved as Treat 2 Target has emerged from aggressive treatments for a larger population to treating per the individual and based on the complexity of each disease.
LISTEN TO THE EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION!
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Now it's YOUR TURN to join the conversation!
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)
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:
00:53 - Tiffany welcomes listeners
01:22 - Tiffany introduces Rick, a fellow patient who has Ankylosing Spondylitis and attended a virtual EULAR conference with Tiffany
3:00 - Rick really enjoyed the opportunity to participate in EULAR virtually since he might not have had the opportunity to attend in person otherwise
03:44 - Rick and Tiffany both attended a hot topic session at EULAR called Treat to Target in AxSpa: Myth or Reality?
04:49 - Tiffany and Rick explain the history of “Treat to Target” as a research initiative within the realm of AiArthritis Disease research
10:22 - Tiffany and Rick share key takeaway points that they learned during the Treat to Target session
16:34 - The study presented in the session had some problems in its design that may have impacted the quality of the results
19:58 - Rick discusses his appreciation for the researchers’ ability to recognize and address the limitations of their own study
21:56 - With “Treat to Target” doctors were given specific criteria for treatment and followed up with patients every 4 weeks whereas the “Usual Care” group included doctors who treated their patients however they wanted to treat them and followed up every 3 months. Doctors within the Usual Care group may have been AxSpa experts who were using the same treatments as the other group.
23:24 - Rick discusses the experience of patients who are never even treated by a rheumatologist
25:49 - Tiffany gives an overview of the second portion of the seminar which covered controversies and myths in Treat to Target discussions
28:46 - Accurate disease diagnosis and identification of co-morbidities is essential to implement a treat to target strategy
29:03 - Remission and removal of treatments is the ultimate goal of treat to target strategies, which is a relatively novel goal in rheumatology, but early diagnosis and aggressive treatment is usually necessary to achieve remission
30:26 - The target of treatment may change over time as co-morbidities develop, as the disease progresses or as treatment becomes more effective
32:06 - The second study presented in the seminar lasted 12 years, and researchers had a difficult time keeping participants enrolled in the study for the full duration
36:07 - Forms that patients fill out at rheumatology appointments to measure disease activity are important for clinical researchers, yet doctors are not implementing these forms correctly (or at all) so researchers aren’t able to collect the data they need
41:55 - Numeric pain scales may not be the best way to track AiArthritis pain as a disease management tool
46:34 - It is important to ensure that patient data collection forms are never used by private health insurance companies or public health officials to penalize rheumatologists for the quality of service they are providing to their patients as that is not the purpose of those forms
48:10 - The ideal goal of treat to target is precision medicine
48:30 - The lack of definitive diagnostic measurements like bloodwork or imagine with AxSpa complicates any treatment and research
50:01 - Tiffany thanks Rick for co-hosting this episode
50:12 - Rick is a contributor to rheumatoidarthritis.net, ankylosingspondylitis.net, and radiabetes.com
50:51 - Check out the sister site to this podcast at aiarthritisvoices.org and meet any of the Voices 360 co-hosts
51:38 - If you would like to take a seat at the table, visit us on the web at aiarthritis.org/podcast, on social medias @IfAiArthritis on all platforms, or email us @ podcast@aiarthritis.org
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?
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.
"Lawrence 'Rick' Phillips has spent over 30 years in local government and local school district administration in Indiana. He has, at various times, been a Director of Finance, City Controller, Personnel Director, Development Director, and all-around computer guy (that position lasted one year). He grew up and lives in central Indiana with his wife Sheryl of more than 40 years. They have two sons and three grandchildren. Rick was diagnosed with type 1 diabetes in 1974 and RA in 2000. He was also diagnosed with ankylosing spondylitis in 2105. Rick has used six biologic medications and has had several surgeries related to RA.
He was diagnosed with AS in 2016 and at that time He vowed to live until He have at least five autoimmune diseases. Hey, a man needs a goal. He loves to ride his bicycle, not far or fast, but for fun. He often writes about RA and diabetes issues on his website, RADiabetes.com. Rick will discuss his grandchildren, given even a slight chance. He credits his father and years of work in the public sector for his dry sense of humor. Rick earned his BS and MS from Indiana University in 1979 and 1989, respectively and an Ed.D. from Nova Southeastern University in 2012. "
Rick writes for the following sites: www.RADiabetes.com , https://rheumatoidarthritis.net/author/LawrPhil/ , and https://ankylosingspondylitis.net/ .
Click here to listen to episode 38 for an excerpt of Tiffany, Deb, and Patrice from their LIVE "Go with Us" to EULAR 2020 research review on the Treat to Target and Remission sessions.
Click here to listen to mini-episode 25 where Tiffany discusses the inherent desire of patients to make decisions with their doctors regarding treatment decisions without interference from insurance companies or governing agencies.
Learn more about "going with us" to EULAR 2020 - and sign up today! (Through September 1, 2020).
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