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On Sunday, join International Foundation for AiArthritis and fellow patient cohosts as they lead discussions in the patient community as well as consult with stakeholders worldwide to solve the problems that matter most in the AiArthritis community.
Episodes
Wednesday Feb 12, 2020
Wednesday Feb 12, 2020
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week we continue the conversation from Sunday’s full-length episode of Rheumy Rounds™, a break out series that brings rheumatology professionals & persons affected by AiArthritis diseases to the same table, as equals, to discuss important community topics that, if solved, would improve communication and positively impact outcomes.
Patient host Kelly and special guest, rheumatology researcher Jerik Leung, discuss Jerik's research into the importance of building a social support network for patients living with AiArthritis diseases.
If you like this episode and haven’t listened to Sunday’s conversation, we invite you to listen to it and then join the conversation by submitting your comments HERE. Also, stay tuned this Sunday for the compelling conclusion to this round table discussion!
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.
Learn more about Rheumy Rounds™ at www.aiarthritis.org/rheumyrounds
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!
Sunday Feb 09, 2020
Sunday Feb 09, 2020
Welcome to AiArthritis Voices 360! Today we are introducing Rheumy Rounds™, a concept developed by the International Foundation forAutoimmune & Autoinflammatory Arthritis (AiArthritis) that will unite two very important stakeholder groups - the rheumatologist (as associated rheumatology professionals) and the patient - in roundtable discussions where both parties will be on equal levels discussing important topics that, if solved, can improve outcomes.
- How does each stakeholder view the expectations and the goals of the visit and how do they align with one another?
- When a patient sees a new rheumy they often feel it's "starting over", but if the medical records are intact, the doctor views it a continuation of care - how do these differing mindsets affect behaviors?
- How do social determinants affect care? (geography, outside social support, income, etc.)
- Rheumies are people too - how does emotional burn out affect visits?
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Tou can find this episode and more information about Rheumy Rounds, including how to be part of the show and submit future topics, at www.aiarthritis.org/rheumyrounds.
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!
Show Notes: Episode 13 Rheumy Rounds Pilot Episode: Office Visit Communication Obstacles (Part 1)
00:52 - Tiffany welcome listeners to the pilot episode of Rheumy Rounds
01:15 - Tiffany is joined today by co-host, Kelly
01:36 - Tiffany identifies her diagnoses
01:58 - Kelly explains her diagnosis
02:35 - Tiffany welcomes today’s guests: Dr. Alfred Kim and Jerik Leung
03:01 - Kelly introduces Dr. Kim and Mr. Leung and explains their work focus in the AiArthritis Community
04:54 - Tiffany explains the goals of the Rheumy Rounds Series
07:04 - Today’s Topic: Improving Doctor / Patient Communication
08:12 - Jerik’s research showed that patient goals did not always align with the physician’s goals, especially relating to medications and side effects
09:20 - Patients who are not connecting with their doctor and aren’t understood by their family will often seek out online communities so that they feel understood by someone
13:05 - Dr. Kim says the primary goal of rheumatologists is to determine what is actually going on with the patient. Are additional testing or imaging studies necessary? Are the notes from the previous doctor or patient provided information enough?
13:54 - Practicing Rheumatology is somewhat similar to practicing psychiatry in that there are usually not clear cut answers divined from test results. The physician has to review as much information as possible to arrive at a correct diagnosis.
14:50 - Rheumatologists must also prepare to have a difficult conversation with patients if the diagnosis doesn’t align with what they have been told previously or what they believe or don’t believe they have
15:13 - Sometimes patients arrive at a new doctor with incorrect information in their chart because a previous doctor had to use a certain diagnosis - even if it wasn’t the correct one - so the patient could get access to a needed medication
17:13 - Rheumatologists primarily base treatment plans on symptoms, rather than diagnosis. This is different than 99% of medicine practice and is confusing for patients.
20:08 - 80% of health outcomes are determined by social determinants, and only 20% is based on medical care
20:14 - Social determinants are the variables of how your living and working situation influences your health (income, education, social support, addiction status, employment status, etc.)
20:40 - Physicians have no meaningful training in influencing social determinants in their patients
23:30 - Patients really benefit from having collaboration between their doctors and having someone coordinate the services they need - both medical and social determinants - all in one place
29:45 - Physicians must translate colloquial information from the patient to technical information so that it will align with their training and then translate it back to colloquial format so the patient will understand it and be able to explain it to their social support network
30:18 - Physicians receive no formal training in communicating effectively with patients
32:33 - Patients should document concerns as they go so that they can communicate them effectively with their physician
32:50 - Shortened appointment times, electronic medical records requirements, and overwhelming workloads all contribute to emotional burnout among physicians who want to provide emotional support for patients
Wednesday Feb 05, 2020
Wednesday Feb 05, 2020
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week Tiffany introduces the new breakout series “Rheumy Rounds” which debuts this Sunday. We want your help! To make this unique series a success, we need your input. In this episode, Tiffany will explain why your thoughts are so important and how you can provide it. All Rheumy Rounds episodes will feature conversations between AiArthritis patients and Rheumatologists who agree to come on the show and help improve communication between patients and their doctors. We look forward to seeing you at the table.
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!
Sunday Feb 02, 2020
Sunday Feb 02, 2020
Welcome to AiArthritis Voices 360. This episode join your host, Tiffany, as she and co-host Effie Koliopoulis discuss the challenges of living with an invisible illness or disability. Listen as they dig into the emotional and physical challenges people face every day by sharing their own experiences with the uncaring assumptions of others. People living with an AiArthritis disease regularly experience both friends and strangers disbelieving or not understanding what these illnesses entail. We hope this episode will be the first step to raising awareness and empathy for people suffering in silence. Spend some time with Tiffany and Effie and then log on to social media to share your story (@ifaiarthritis)!
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!
Wednesday Jan 29, 2020
Wednesday Jan 29, 2020
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week’s topic is coping with an invisible illness. How do you get the support and accommodations you need when people think you look healthy? Have you ever had an incident that shaped the way you behaved moving forward? Do you feel pressure to be performative in some way with your disability? Listen to Tiffany’s story, then log on to Twitter, Facebook, or Instagram to share yours (@IfAiArthritis on all platforms).
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!
Sunday Jan 26, 2020
Sunday Jan 26, 2020
Mariah is the founder of Mamas Facing Forward, an organization that supports Mothers with chronic illness, and a mother who has experienced both non-medicated and medicated pregnancies. Deb experienced pregnancy when doctors believed that AiArthritis patients could not take any medication during pregnancy or breastfeeding, and Tiffany inquires about concerns from a person who may be interested in planning a family.
Mother to Baby is an organization that collects and analyzes information on the safety of medication during pregnancy and breastfeeding. If you or your partner are thinking about becoming pregnant, this is a can’t-miss episode for you!
Learn more about Mamas Facing Forward:
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!
Show Notes: Episode 11 – “Pregnancy Planning With A Chronic Illness”
00:51 – Tiffany welcomes listeners and fellow patient co-hosts, Deb Constein and Mariah Leach
03:30 - Mariah’s Story
04:35 - Mariah founded Mamas Facing Forward (www.mamasfacingforward.com and private support group on Facebook) to support mothers experiencing chronic illness
07:15 - Pregnant women are under societal pressure to avoid any medication while pregnant, which can be dangerous for both mother and fetus
08:30 - Options for pregnant and breastfeeding women living with AiArthritis are improving due to new research and new data on safety
10:41 - Rheumatologists that have been in practice for a long time may need updated information about treatment options during pregnancy and breastfeeding
11:55 - Women living with a chronic illness need a pregnancy plan to improve outcomes
12:50 - Some women experience temporary remission during pregnancy, but others may have flares or more symptoms while pregnant
13:50 - Patients may not be honest with their rheumatologist about stopping contraception if doctors are not supportive of women’s choices and take an active role in pregnancy planning
15:37 - Pregnancy plans should include a treatment plan even if patients would like to attempt a med-free pregnancy
17:26 - Pregnant women with chronic illness need support and may need assistance in caring for other children
17:45 - AiArthritis women need a post-pregnancy plan because diseases tend to flare immediately after birth
18:45 - Other people may be judgmental about the way new mothers care for their babies due to limitations imposed by their disease
19:30 - Confidence and the ability to advocate for their own needs are critical for new mothers living with AiArthritis diseases
20:03 - New mothers need to be prepared for people to criticize their use of medication
20:44 - Women who need to use formula so they can take certain medicines experience judgment and criticism
23:29 - Researchers cannot conduct clinical trials on pregnant women, but MotherToBaby and other organizations can collect and analyze observational data
23:40 - Pregnant women can contribute to MotherToBaby studies with very little effort required
25:30 - Find a rheumatologist and an Obstetrician that support your pregnancy plan before conceiving if you can
26:27 - lupuspregnancy.org has resources about how to talk to your doctor about your pregnancy plan
29:44 - Tiffany welcomes Lynette from MotherToBaby
30:24 - Lynette explains the work of MotherToBaby
31:35 - Lynette discusses how MotherToBaby obtains their data
32:30 - MotherToBaby believes that all women should have access to medication safety information and that it should be intelligible to them
35:30 - When people claim that a medication-free pregnancy is always safer, they are ignoring the risks of an untreated chronic illness for the mother and the fetus
36:45 - There are new options for safe treatment while breastfeeding
37:35 - Women must be their own advocate when navigating the healthcare system
38:16 - Patients and doctors can visit mothertobaby.org for information on medicine safety, or they can call 1-877-311-8972 to speak to a trained teratogen information specialist
39:01 - Resources about all aspects of pregnancy and motherhood with chronic illness are available at mamasfacingforward.com
40:53 - Tiffany thanks everyone and invites listeners to visit www.aiarthritis.org/podcast to access resources and provide your thoughts on this topic
Wednesday Jan 22, 2020
Wednesday Jan 22, 2020
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!
Sunday Jan 19, 2020
Sunday Jan 19, 2020
Welcome to AiArthritis Voices 360. This week, join your host, Tiffany, as she and co-host Charis Hill discuss the evolution of the term Ankylosing Spondylitis into the new umbrella term: Axial Spondyloarthritis. What does this new term mean? How will it impact treatment options or the patient experience? Does it even matter what your diagnosis is if the treatments for AiArthritis are all basically the same? Listen in as they talk about these and other issues surrounding finding the right diagnosis. Then visit us on social media or online to make your voice heard in the ongoing discussion.
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!
Show Notes: Episode 10 – “The Right Diagnosis”
00:57 – Tiffany welcomes listeners and fellow patient co-host, Charis Hill
03:14 - The diagnosis of ankylosing spondylitis has been replaced with the umbrella term “axial spondyloarthritis”
03:46 - Non-radiographic axial spondyloarthritis was also added as a diagnosis that would cover early or atypical disease presentation that isn’t visible on radiographic imaging
06:10 - Some physicians within the rheumatology community do not believe there is a meaningful reason to differentiate between radiographic and non-radiographic diagnoses
06:25 - There is still a lack of clarity with regard to diagnostic coding which can impact patient access to treatments and the ability of researchers to track diseases
08:08 - Charis’ diagnosis story
15:08 - Early research suggests that non-radiographic axial spondylitis may be equally common in men and women, is often found in people who are HLA-B27 negative, and may have lower inflammation markers on blood work than the radiographic variety
16:35 - Biologically female patients are more likely to have neck involvement than biologically male patients, who present with the traditional lower spine involvement
18:16 - Axial spondyloarthritis is a more clinically accurate term because ankylosing spondylitis references only fusion of the spine, whereas axial spondyloarthritis encompasses inflammation or arthritis involvement anywhere in the center of the body
21:30 - Within the medical community, there is still significant conversation about what terminology to use
22:40 - Tiffany wonders whether radiographic patients would object to sharing a diagnosis with non-radiographic patients
23:47 - The Spondylitis Association of America has detailed information on their website about the differences in the changing terminology
24:37 - Spondyloarthrtis is the umbrella term that encompasses radiographic, non-radiographic, and peripheral disease presentations
24:57 - Patients want to be informed about their diagnosis terminology and understand what it means
26:05 - There has been considerable effort to raise awareness about Ankylosing Spondylitis, and now some people fear that changing the term will make it even more difficult to educate the public about this disease family
27:43 - Possibly grouping several diagnoses together will help raise awareness by increasing the numbers of people united toward the same goal
29:05 - Patients are still reporting that doctors don’t believe them without radiographic evidence
29:15 - Hopefully using the umbrella terminology with the subset diagnoses will help all rheumatologists to understand that not all patients will present with radiographic evidence
30:28 - The CDC does not have an accurate count of the number of patients with axial spondyloarthritis because many people with non-radiographic AxSpa were given a different diagnosis code so they could have access to treatments
32:05 - Even if the treatment isn’t going to change, patients want validation that their doctor knows exactly what is going on with them
32:15 - Patients want an accurate diagnosis so that they will have access to the right treatments in the future as new medications may be approved for their specific diagnosis
33:08 - Rheumatoid arthritis research has been applied to AxSpa patients, even though those diseases are very different
34:46 - Accurate diagnosis in medical records may also be important to future generations for reporting their medical history accurately
39:45 - Rheumatologists treat 200+ different diseases, so it is important for the patient to be knowledgable about their own disease because you may be 1 of only 10 patients your doctor sees with your specific disease
41:30 - Tiffany thanks Charis for co-hosting the episode
41:55 - Tiffany invites everyone to visit www.aiarthritis.org/podcast to access resources and provide your thoughts on this topic
42:53 - Visit aiarthritis.org/podcast to nominate yourself or someone else to co-host an episode of AiArthritis Voices 360
Wednesday Jan 15, 2020
Wednesday Jan 15, 2020
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!
Sunday Jan 12, 2020
Sunday Jan 12, 2020
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!
Show Notes: Episode 9 – “Changing the world with your knee tissue - investing in our future”
00:51 – Tiffany welcomes listeners to a touring episode recorded at the American College of Rheumatology Annual Meeting featuring rheumatologist and clinical researcher, Dr. Aurélie Najm
02:10 - Tiffany is joined by patient co-host Deb Constein
02:44 – Aurélie introduces herself
02:57 - She is researching providing tailored treatments to patients with rheumatoid arthritis
03:22 - Aurélie is the co-chair of the EULAR Synovitis Study Group, which is studying synovial tissue to determine the best treatment for each patient
05:10 - Cellular dysfunction in the synovial membrane causes synovitis (or inflammation of the synovial lining in joints)
07:30 - Patterns of inflammation within the synovial tissue can predict the future evolution of disease for that patient and which anti-rheumatic drugs may be more effective for that patient
10:56 - Deb discusses her experience with joint biopsy procedures
13:34 - The two methods available for obtaining synovial samples from joint spaces are arthroscopic or ultrasound guided biopsy
15:58 - Arthroscopic biopsy may be more precise due to the ability to visualize the inflammation when choosing a sample site
17:31 - Please consider providing input on what questions you have about synovial biopsies or participating in clinical research by visiting our website
19:41 - What would be the barriers and benefits to you as a patient participating in clinical research?
20:44 - Explaining the purpose of any procedure to the patient, especially when procedures are for clinical research and not necessity, is critically important.
22:11 - Volunteering for procedures to support clinical research is “an investment in the future.”
23:00 - Tiffany invites everyone to visit www.aiarthritis.org/podcast to access resources and provide your thoughts on this topic
23:34 - Tiffany thanks Aurélie for her time
24:56 - Researchers need patients to participate in clinical trials to benefit the entire AiArthritis community
25:10 - IFAA seeks to help researchers develop the right protocols to recruit patient participants
26:03 - Visit aiarthritis.org/podcast to learn how you can help