A podcast bridging the gap between patient experience, research and clinical practice by providing accessible and relevant information that can inform patients and healthcare providers alike.


Welcome to Relatable Rheumatology: From Stories to Studies, a podcast where we explore the personal experiences of people living with rheumatic diseases and the latest research evidence on the pathway to diagnosis and challenges around it, what research is telling us about rheumatic diseases and strategies to manage it and the latest cutting-edge treatment and therapeutics.

In this podcast, we invite patients to share questions or concerns that they encountered during their journey, and we welcome experts in relevant fields to describe the research evidence, novelties in clinical practice, and new evidence and technology to address these concerns and questions.


You can check out Relatable Rheumatology episodes below or wherever you listen to podcasts. Make sure to subscribe to our podcast so you don’t miss an episode and email us at [email protected] with feedback or ideas for future episodes.

Exploring Chronic Pain: A Journey into Research

“Why does chronic pain affect the whole person?”

In our third episode of Relatable Rheumatology: From Stories to Studies, we explore chronic pain and our expanding understanding of its impact on both body and mind. To examine chronic pain from a “whole-person” perspective, we will discuss how pain thresholds change, how emotions intersect with bodily sensations, and what all of this means for chronic pain treatment using pharmacological and non-pharmacological approaches.

Beth Darnall

Dr. Beth Darnall

Beth Darnall, PhD is Professor of Anesthesiology, Perioperative and Pain Medicine at Stanford University School of Medicine where she directs the Stanford Pain Relief Innovations Lab. Her work involves developing and investigating novel pain treatments that are scalable, effective, and low burden. She leads multiple pain treatment trials that are active nationally.

Tien Sydnor-Campbell

Tien Sydnor-Campbell

Tien Sydnor-Campbell, MS, CMT is a medically-retired, body-centered psychotherapist and former bodyworker with 25+ years of clinical experience. A specialist in recognition that the body and mind are not separate in health/care, Tien’s role has been to empower clients in managing somato-emotional imbalances. Diagnosed with Autoimmune Rheumatoid Disease in 2010 and being a lifelong volunteer/advocate informs her efforts to educate the public about the unique stigmas and difficulties that BIPOC face in health/care (physical, mental/emotional and social) settings. Tien is a vocal international advocate, published author (non-fiction, research and urban self-help genres), speaker, and philosopher on all things BodyMind.

Additional Resources:

(1.) https://creakyjoints.org/chronic-pain/
Pain Explained: An Online Package to Better Understand and Manage Chronic Pain.
Created with the support of The Patient Centered Outcomes Research Institute (PCORI)

(2.) https://pubmed.ncbi.nlm.nih.gov/35486218/
Cannabis for Rheumatic Disease Pain: a Review of Current Literature
Nowell WB, Gavigan K, L Silverman S. Cannabis for Rheumatic Disease Pain: a Review of Current Literature. Curr Rheumatol Rep. 2022 May;24(5):119-131. doi: 10.1007/s11926-022-01065-7. Epub 2022 Apr 29. PMID: 35486218.

(3.) https://pubmed.ncbi.nlm.nih.gov/29717254/
To treat pain, study people in all their complexity
Darnall B. To treat pain, study people in all their complexity. Nature. 2018 May;557(7703):7. doi: 10.1038/d41586-018-04994-5. PMID: 29717254.

(4.) https://pubmed.ncbi.nlm.nih.gov/34541966/
Psychological Treatment for Chronic Pain: Improving Access and Integration: Improving Access and Integration.
Darnall BD. Psychological Treatment for Chronic Pain: Improving Access and Integration. Psychol Sci Public Interest. 2021 Sep;22(2):45-51. doi: 10.1177/15291006211033612. PMID: 34541966; PMCID: PMC9970761.

(5.) https://www.amazon.com/Healing-Time-BodyMind-Black-Womxn/dp/1950279308/ref=sr_1_1?qid=1687534449&refinements=p_27%3ATien+Sydnor-Campbell&s=books&sr=1-1
It’s Healing Time for the BodyMind of Black Womxn: How to Live a Life You Love and Love the Life You Live Paperback – November 14, 2020 by Tien Sydnor-Campbell

(6.) https://www.amazon.com/EveryBODY-Has-Story-BodyMind-Journal/dp/B0BFJDS714/ref=sr_1_2?qid=1687534449&refinements=p_27%3ATien+Sydnor-Campbell&s=books&sr=1-2
EveryBODY Has A Story: A Body Mind Journal Paperback – September 14, 2022 by Tien Sydnor-Campbell (Author)

Vein Truth? Blood Work in Rheumatoid Arthritis Diagnosis, Treatment, and Monitoring

“What should I be paying attention to in my RA-related blood work?”

In our second episode, we will be exploring blood work in rheumatoid arthritis (RA) and how lab results are viewed and used by someone living with RA and by an expert rheumatologist. We are joined by Dr. Liana Fraenkel, attending rheumatologist at the Berkshire Medical Center and Adjunct Professor of Medicine at Yale University, and Deen Allen, a PhD in cosmetic chemistry and patient advocate who lives with RA. We also go on site at the EULAR 2023 conference in Milan, Italy, where Dr. Nowell presents his research and interviews RA patients Deb Constien and Eileen Davidson about the topic. Although blood work provides useful information about RA disease, it has limitations. With future innovations, blood work may be able to tell us much more.

Dr. Liana Fraenkel

Dr. Liana Fraenkel

Dr. Fraenkel is an attending rheumatologist at the Berkshire Medical Center. She currently serves as the Director of Medical Education and Population Health Research for BMC and is Adjunct Professor of Medicine at Yale University. Dr. Fraenkel is currently the Vice President for the Rheumatology Research Foundation. Her research interests have focused on improving risk communication and shared decision making for patients with rheumatic disease.

Deen Allen Jr

Deen Allen Jr

Aberdeen Allen Jr Ph.D. is a research scientist and academic who has significantly contributed to the field of cosmic chemistry despite living with rheumatoid arthritis. Despite the challenges posed by his condition, he has continued to pursue his passion for research and education, inspiring others to never give up on their dreams.

Additional Resources:

(1.) https://onlinelibrary.wiley.com/doi/abs/10.1002/acr.25187
Nowell WB, Venkatachalam S, Gavigan K, et al. OP0288-PARE Patient Perceptions of Rheumatoid Arthritis Blood Work and Utility of a Test Predicting Response to New Medication: A Cross-Sectional Survey in the ArthritisPower Registry. Annals of the Rheumatic Diseases. 2023;82:188

(2.) https://learn.creakyjoints.org/ra-tests/
A Patient’s Guide to Understanding Rheumatoid Arthritis Testing & Monitoring – CRP, ESR, Vectra, and More: Learn about the main RA blood tests and what they can — and can’t — reveal about your health 

(3.) https://nras.org.uk/resource/blood-matters/
Blood Matters: A guide to the blood tests used in managing rheumatoid arthritis and adult juvenile idiopathic arthritis 

(4.) https://pubmed.ncbi.nlm.nih.gov/25365085/
Pincus T, Gibson KA, Shmerling RH. An evidence-based approach to laboratory tests in usual care of patients with rheumatoid arthritis. Clin Exp Rheumatol. 2014 Sep-Oct;32(5 Suppl 85):S-23-8. Epub 2014 Oct 30. PMID: 25365085

(5.) https://pubmed.ncbi.nlm.nih.gov/19962617/
Pincus T, Sokka T. Laboratory tests to assess patients with rheumatoid arthritis: advantages and limitations. Rheum Dis Clin North Am. 2009 Nov;35(4):731-4, vi-vii. doi: 10.1016/j.rdc.2009.10.007. PMID: 19962617

Making the Invisible Visible: Using Patient-Reported Outcomes in Research

In our first episode, we will be exploring how the lived experience of someone living with a disease condition like Rheumatoid Arthritis, can systematically be documented via the use of what we call Patient Reported Outcome Measures. Joining us to explore this topic are Dr. Susan Goodman, Professor of Clinical Medicine at Weill Cornell Medicine and Director of the Integrative Rheumatology and Orthopedics Center of Excellence. She is also Medical Chief and Research Director of the Combined Arthritis Program Hospital for Special Surgery and Shelley Fritz who is an educator and patient advocate who lives with Rheumatoid Arthritis and several co-morbidities.

02 - Dr. Goodman

Dr. Susan Goodman

Dr Goodman is an Attending Rheumatologist at Hospital for Special Surgery and Professor of Clinical Medicine at Weill Cornell Medicine. She directs the Integrative Rheumatology and Orthopedics Center of Excellence at HSS. Her clinical and research interest is patients with inflammatory arthritis, with a research focus on perioperative outcomes and management of inflammatory arthritis patients undergoing orthopedic surgery.

02 - Shelley

Shelley Fritz

Shelley Fritz is an educational consultant and patient advocate living with rheumatoid arthritis and several other comorbidities. She has a degree in elementary education and a master’s degree in educational leadership. Shelley is currently a patient education fellow with Global Healthy Living Foundation. Her hobbies include long walks with her dogs, hiking, relaxing at the beach, and writing.

Additional Resources:
(1.) https://ard.bmj.com/content/71/11/1855.long
Bartlett 2012 “Identifying core domains to assess flare in rheumatoid arthritis: an OMERACT international patient and provider combined Delphi consensus” from the OMERACT RA Flare Working Group where patients identified fatigue as an important concern
(2.) https://arthritis-research.biomedcentral.com/articles/10.1186/s13075-019-2076-7
Gavigan 2020 – in particular look at Figure 6 – that’s really the one related to PROs, including RAPID3 and how well they measure patients’ off the cuff response about how they are feeling
(3.) https://arthritis-research.biomedcentral.com/articles/10.1186/s13075-021-02430-0
Nowell 2021 “Which patient-reported outcomes do rheumatology patients find important to track digitally? A real-world longitudinal study in ArthritisPower”
(4.) https://pubmed.ncbi.nlm.nih.gov/30927515/
Yun 2020 – this was a good study of ArthritisPower data to show how you can predict certain PROs using other PROs, meaning you don’t have to always ask patients every single measure, so it can save some time and burden on patients responding to questions

Hosts Dr. Ben Nowell and Dr. Shilpa Venkatachalam describe their objective and format for the Relatable Rheumatology podcast, and they offer examples of topics for upcoming episodes.

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Dr. Ben Nowell, PhD, MSW – Director, Patient-Centered Research

Dr. Ben Nowell is Director, Patient-Centered Research, at the Global Healthy Living Foundation and CreakyJoints®, and Principal Investigator of the ArthritisPower™ registry. His research interests in rheumatology include examination of the factors that facilitate patient engagement and adherence to providing digital health measures, use of wearable devices in the measurement of disease activity, and patient-reported outcomes and shared decision making. Previously, Ben was the medical social worker and Community and Long-Term Care Coordinator for the Ottawa Regional Stroke Centre and Research Coordinator for an evaluation of participant outcomes in the Arthritis Foundation chronic disease self-management programs for arthritis.


Shilpa Venkatachalam, PhD – Director, Patient-Centered Research
Operations and Ethical Oversight

Dr. Shilpa Venkatachalam is Director, Patient-Centered Research Operations and Ethical Oversight, and co-PI of the ArthritisPower registry. She was among 25 chosen by The Young Persons Chronic Disease Network in collaboration with American Cancer Society and the Harvard Global Equity Center for The Global Cancer Advocacy Training.

She has been a regular panelist for video conference presentations on Global Health Topics by the Ambassador’s Club at the United Nations as part of a UNITAIR initiative. She has also served on the ‘Science and Policy Advisory Council”, for the National Pain Advocacy Center (NPAC). Dr Venkatachalam lives with inflammatory arthritis and also served as a patient representative and voting member in the development of the 2021 ACR guidelines for the treatment of RA and on the patient panel for the 2022 American College of Rheumatology Guideline for Vaccinations in Patients with Rheumatic and Musculoskeletal Diseases. She has international experience in healthcare and has worked in rural and urban India, the United States and in Chad, and has both private and public sector experience on chronic health disease related projects.

Relatable Rheumatology: From Stories to Studies is a new podcast series produced by the non-profit Global Healthy Living Foundation, a non-profit organization dedicated to improving the quality of life for people living with chronic illnesses, and is co-produced with HCP Live.

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