AiArthritis Voices 360 Talk Show

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Episodes

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

Sunday Sep 13, 2020

Episode 44: Patient-Reported Symptoms - Connecting the dots to improve education

Sunday Sep 13, 2020

This week join your patient host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she discusses the mission and future projects of the organization and the AiArthritis Voices 360 Talk Show.

The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. AiArthritis is proud to announce the impending publication of the first-ever 100% patient-reported symptoms brochure for Stills Disease, launching on September 7th 2020 - Stills Disease Awareness Day. This project could not have been possible without the participation of patients, like you, are willing to donate your time, expertise, and lived experiences.

This talk show was created to help bring more patient voices into the conversation about this and many other projects. We are very excited to transition to bimonthly episodes and incorporate the new AiArthritis Voices online platform to deepen these conversations and move more of our ongoing projects to their ultimate finish lines. We want YOU to join us at the table! Listen to this week’s episode to find out exactly how you can do that in this exciting new phase of the organization’s work.

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).

Show Notes: Episode 44 – “Connecting the Dots”

00:53 - Tiffany welcomes listeners

01:15 - Today’s episode is about how patients sharing their experiences can begin to solve the issues facing the AiArthritis patient community

3:00 - Tiffany shares her diagnosis story

5:00 - Many patients research their symptoms online to try and solve the mystery of what is happening with their body

6:18 - Symptoms recognized by the medical community may not always be consistent with the lived experiences of patients

10:09 - AiArthritis conducted an Early Symptoms Study to identify common patient-reported symptoms of 6 AiArthritis Diseases

11:25 - AiArthritis has a unique process that seeks to solve problems thru ongoing patient conversations

12:57 - One of our projects has been to develop a Stills Disease Pamphlet thru a campaign called “My Stills”

16:06 - The first ever fully patient reported Stills Disease brochures including a comprehensive list of symptoms will be published on September 7, 2020 - Stills Disease Awareness Day

17:38 - AiArthritis plans to repeat this process for all the other AiArthritis patient communities we serve

19:11 - Voices 360 will transition to bimonthly episodes so that the organization can devote more development time to each episode to include as many stakeholders as possible and accomplish as many of our goals as possible

20:18 - All patients and parents of juvenile patients are invited to join our sister site AiArthritis Voices at aiarthritisvoices.org and meet any of the Voices 360 co-hosts or participate in the conversations about our episode topics

20:38 - View all of our projects at aiarthritis.org

22:03 - Tiffany thanks listeners and invites them to get involved in any of our projects by visiting us on the web or all social media platforms @IFAiArthritis

Sunday Aug 30, 2020

Episode 43: Support - It‘s a Family Affair

Sunday Aug 30, 2020

This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, and Juana and Estela Mata, co-founders of Looms 4 Lupus, as they discuss the complicated issues surrounding supporting patients living with autoimmune and autoinflammatory arthritis diseases and their loved ones.

Looms 4 Lupus is an organization dedicated to providing an environment for education and outreach to Lupus and Fibromyalgia survivors and their family members through multiple avenues such as hands-on workshops, informational clinics, bilingual resources, and psychosomatic support groups.

On this episode, Tiffany, Juana, and Estela talk about the need for support for AiArthritis patients from their inner circle of family and friends, as well as the support needs of people who have a loved one with a chronic illness. They discuss the importance of open communication in receiving and providing support and the need for raising global awareness for AiArthritis diseases so that friends and family members of people living with these diseases can better understand their loved ones needs and limitations.

The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. One of the most persistent problems facing patients is a lack of understanding by the rest of the world. Too often people who are suffering are dismissed, ignored, or belittled because their family members, friends, or doctors do not recognize the symptoms of their disease. You can be a part of helping us change that. We need you to share your story.

Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!

JOIN TODAY!

Show Notes: Episode 43 – “Support - It’s a Family Affair”

00:53 - Tiffany welcomes listeners

01:30 - Tiffany is joined today by Estela and Juana Mata, co-founders of Looms 4 Lupus

2:40 - Today’s topic is support for loved ones who are AiArthritis patients

2:47 - Tiffany explains the way the talkshow and the AiArthritis organization approaches projects to help improve the lives of AiArthritis patients

4:18 - Estela and Juana discuss their experience as a family supporting Juana’s battle with Lupus and co-morbidities

5:48 - Family members of AiArthritis patients also require support

9:43 - Support may look very different from one family to the next or even among different members of the same family

13:57 - Family members may need assistance to find the best way to help and support their loved one living with an AiArthritis disease

16:30 - Diagnoses that are more familiar to people like cancer tend to illicit immediate support because people may feel more empathy for conditions they understand

18:18 - AiArthritis patients may face judgment from others because people don’t understand their disease or their limitations

19:01 - Patients sometimes feel pressure to be performative with their illness so that their inner circle will be more supportive

22:52 - Communication between the patient and the family is critical to establishing adequate support

31:24 - It may be more difficult for male patients to ask for or accept the help they need from their loved ones

32:28 - Counseling and support groups can be very beneficial in helping families navigate figuring out how to support each other effectively

35:39 - To share your story on this topic, visit our website at aiarthritis.org/podcast

35:51 - If you are living with an AiArthritis disease, check out the sister site to this podcast at aiarthritisvoices.org and meet any of the Voices 360 co-hosts

36:28 - You can also find Estela and Juana @looms4lupus on all social media platforms or by visiting their website at looms4lupus.org

37:27 - 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

Sunday Aug 23, 2020

Episode 42: Treat to Target Today with Complex Diseases - Is it Possible?

Sunday Aug 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.

Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!

JOIN TODAY!

AiArthritis Voices 360 is the official talk show for the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis). You can find us on the web at www.aiarthritis.org.

Show Notes: Episode 42 – “Treat to Target Today with Complex Diseases - Is it possible?”

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

Sunday Aug 16, 2020

Episode 41: Biomarkers - DIagnosis, Disease Management, & even PREVENTION?!

Sunday Aug 16, 2020

This week, Tiffany and Patrice discuss the importance of biomarkers. Do biomarkers hold the key to understanding disease severity and predicting disease onset?

In this episode, we talk about biomarkers, or a measurable indicator present in the blood or tissues, and how their presence in our bodies can predict disease severity and guide treatment development. Furthermore, evidence that identifying biomarkers early - BEFORE DISEASE ONSET - could actually prevent a person from developing the disease. Now, there is still the environmental plus genetic factors to consider, but the findings are promising.

While the research focuses on Rheumatoid Arthritis (RA), showing how those who are sero-positive - in addition to having other genetic biomarkers - have a higher likelihood of developing severe disease and bone erosion, Tiffany points out this is similar to Axial Spondyloarthritis, where many of those with non-radiographic disease do not have the biologic HLA-B27 gene that is present in most with radiographic evidence.

The bottom line is that learning about biomarkers can help patients navigate their own healthcare journey, but also could possibly prevent their loved ones from developing these diseases in the future.

Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!

JOIN TODAY!

AiArthritis Voices 360 is the official talk show for the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis). You can find us on the web at www.aiarthritis.org.

Sunday Aug 09, 2020

Episode 40 Research at a Glance - Posters & Abstracts: Patient reviewers, here we come!

Sunday Aug 09, 2020

Today Tiffany talks about Posters & Abstracts, or summaries of research, thousands published annually just within the rheumatology community. So, unless the poster is featured in a session, attendees must search the poster database to learn about recent, current, or ongoing research that may be of importance to know.

As we continue our tour of the EULAR scientific conference*, we are inviting patients from around the world to join our team in patient-led Poster/Abstract research reviews. During today's show, Tiffany simulates the simplicity of viewing this short research summary and the value associated with patients (and patient organizations) who are privy about current research efforts.

Poster/Abstract selected for review: Evolving the Management of RA (eRA) program: Educational tools to support daily practice (of rheumatologists)

Listen to the episode to hear the review and to get involved with AiArthritis in expanding research within the patient community!

Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!

JOIN TODAY!

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*Since June, our team has been learning from the research presented at the European League Against Rheumatism (EULAR) 2020 annual scientific e-Congress ... and we are inviting those diagnosed with our diseases - and parents of juvenile patients - to join us! Live and online research reviews, watch parties, and more. Sign up today by joining https://aiarthritisvoices.org or learn more at https://www.aiarthritis.org/go-with-us-to-eular-2020.

To learn about RheumyRounds, the break out pilot series for this Talk Show that unites the patient and rheumatology professional "at the table" as equals in conversations that solve problems to improve communication and community outcomes. Want to get involved with RheumyRounds? Learn more at https://www.aiarthritis.org/rheumyrounds.

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AiArthritis Voices 360 is the official Talk Show of the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis). Our mission to help others, like us, affected by AiArthritis diseases, have a voice alongside other stakeholders as equals, so together we can solve the problems that impact education, advocacy, and research.

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Please consider donating so we can continue the work we do to bring you this show, as well as all the other projects we do at our organization. Thank you in advance for your support! DONATE

Sunday Aug 02, 2020

Episode 39: Patient Engagement in Research: the OMERACT Experience

Sunday Aug 02, 2020

This week Tiffany (axial spondyloarthritis) and Deb (rheumatoid arthritis) talk about their experiences - and which could be YOUR experiences - having your voice count in research initiatives.

New primary outcomes (endpoints that should be measured) in rheumatology trials where shared-decision making between doctors and patients are required...and patients were part of this historic decision. This was part of the international, collaborative of rheumatology stakeholders - OMERACT (Outcome Measures in Rheumatology).... and Deb and Tiffany were there and they want to tell you all about it!

Learn more about OMERACT.

AiArthritis projects referenced in this episode:

Preparing Patients for Precision Medicine Trials (which includes development of a Shared Decision Making Tool). Learn more.
Changing the World with Your Knee - our collaboration with researchers on the OMERACT Synovial Tissue group where we facilitate focus groups with patients to learn what they need to understand about these studies, which include participating in voluntary knee biopsies, in order to want to be part of the study. Learn more.

Pull up a seat - it's your turn at the table!

AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis).

Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!

JOIN TODAY!

Donate Today! Thank you for your continued support of this show. If you would like to give to our cause, so all patients globally always have a seat "at the table", your gift would be appreciated. Give today!

Sunday Jul 26, 2020

Episode 38: EULAR Debrief Treat to Target

Sunday Jul 26, 2020

AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/podcast.

Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!

JOIN TODAY!

Sunday Jul 19, 2020

Episode 37: Patient? Nonprofit? Researcher? Healthcare Services? You‘re invited to an experience that can change our future.

Sunday Jul 19, 2020

We don't represent patient voices, we are the patient voices. We work hard to ensure ALL voices - not just a small percentage of select patients - are counted. And now we have the platforms in place to include everyone's voice who diagnosed with AiArthritis diseases - regardless of geography or disease limitations. We also have the tools and professional experience to bridge the patient conversation with other stakeholders (doctors, nurses, researchers, legislators, drug manufacturers, non-pharmacologic companies, etc) so, together as equals, we can solve the most pressing community problems.

It's finally ready! Two years in the works, but now the communication platforms, led by expert patient facilitators, are in place. An online site, called AiArthritis Voices, will tie in our online conversations, YouTube channel, live "tours", and educational gatherings) with all the topics we cover on our AiArthritis Voices 360 Talk Show. Those diagnosed with, suspected of having an AiArthritis disease, or the parent of a juvenile patient may join this private online site. There you can Talk, Learn, and Connect with many opportunities to improve your own health journey and to help millions of others like you.

Other stakeholders can join as Engagement Partners, who we work with to improve the outcomes of our projects. In turn, we develop solutions with a higher impact to our community.

Listen to this episode to learn more about how our NEW AiArthritis Voices online platform will work in conjunction with this AiArthritis Voices 360 Talk Show to give YOU a voice. In turn, together, we will solve the most pressing issues that will impact education, advocacy, and research.

Learn more about AiArthritis Voices online site at https://aiarthritisvoices.org.

Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!

JOIN TODAY!

Sunday Jul 12, 2020

Episode 36: Preparing Patients for Precision Medicine - Collaboration with the Rheumatology Nurses Society

Sunday Jul 12, 2020

Welcome to AiArthritis Voices 360, the official Talk Show for the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis).

In this episode, Event Host, AiArthritis CEO and person living with AiArthritis diseases, Tiffany Westrich-Robertson, is joined by patient Co-Host, Katie Steele. They speak with Carrie Beach, RN, from the Rheumatology Nurses Society (RNS) about our collaboration to improve patient voices in education and research (featuring our award-finalist Preparing Patients for Precision Medicine project). This is an excellent example of how patients and rheumatology professionals sit "at the table" to discuss projects - because during the conversation we actually came up with a new spin on the collaboration! Listen to learn more about our work together to increase patient (and nurse) education about precision medicine and how YOU can join us!

We also start the episode discussing the patient-nurse relationship and how that window of opportunity while we have the nurses' ear could be better utilized.

Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!

JOIN TODAY!

Between May 16 - 20th, we took our AiArthritis Voices 360 Talk Show LIVE, to help teach more people who we are, what we do, and how we impact the lives of those affected by AiArthritis Diseases while honoring the 450 million people worldwide living with our diseases. It also served as the starting line for our 2020 fundraising efforts. This episode is an excerpt from one of those episodes.

Love the show? Please consider donating so we can continue bringing this amazing resource to you! DONATE TODAY

Sunday Jul 05, 2020

Episode 35: ORIGINAL EPISODE REPLACED - AUTO Ball Honorary Chair, Angela Durazo: Shifting Gears - Turning Pain into Power

Sunday Jul 05, 2020

While we asked Ms. Durazo if we could keep this resource for you to help navigate your challenges with invisible disease, she declined, stating the contract to use the Angela Durazo brand was only agreed upon for a one year term.

You can find several other invisible disease episodes and associated conversations to join! We have connected this show space with a previous episode on invisible disease.

Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!

JOIN TODAY!