Shelley Fritz is the Patient-Centered Engagement Manager at the Global Healthy Living Foundation, where she works hard to ensure every patient feels heard and represented. Living with rheumatoid arthritis, fibromyalgia, and osteoarthritis, she brings a deeply personal understanding to her work — not just as a professional, but as someone who has walked this path herself. Her empathy, insight, and lived experience shape the way she supports and advocates for our community every day. Shelley writes articles for CreakyJoints, has presented research at ACR, and hosts podcasts and audio guides that help translate research into meaningful, patient-friendly insights — ensuring that information reaches the people who need it most.

Each time a person living with a condition, a patient partner, takes the podium, they remind the medical community that every data point reflects a person’s reality — their pain, their history, their daily struggles and triumphs — and that research and data matter because they tell a story to help the medical community understand more about the disease. Research is only meaningful when it truly improves how people live with chronic illness.

At the 2025 American College of Rheumatology (ACR) Convergence, I had the honor of speaking on a panel alongside Jasvinder Singh, MD, MPH, and Kristine Carandang, PhD, OTR/L, about something I’m deeply passionate about: making research clear, relevant, and useful for patients.

As someone living with rheumatoid arthritis, osteoarthritis and fibromyalgia, I stood there with a responsibility and was proud to represent the patient community on one of the world’s largest rheumatology stages. In my role as Patient-Centered Engagement and Insights Manager at the Global Healthy Living Foundation (GHLF), I spoke directly to the scientific community about why research matters to the people it aims to help—patients like me and the many others I serve.

My message to the scientific community was clear: no matter how excellent the research is, it won’t have an impact if patients can’t understand, use it or apply it.

The Power of Lived Experience in Shaping Research

For too long, research has been shared about patients but not with them. It has been conducted around their lives instead of alongside them. Presenting at ACR gives patients the opportunity to show why our lived experiences matter in shaping what gets studied, how results are shared, and how findings translate into real-life improvements.

When patients like me and so many others in our community at CreakyJoints speak out, when we participate not just as a recruitment number but as an equal partner in research, we remind researchers that every statistic represents a person navigating fatigue, pain, medication decisions, and uncertainty. In addition to being published in top-tier journals, we help bridge the gap between data and daily life. It also becomes a tool for meaningful change and advances our own understanding of these diseases so we can make better-informed decisions and work together with clinicians to improve outcomes.

Research should reach everyone it’s meant to help in ways that are inclusive, accessible, and empathetic.

Making Research Clear, Relevant, and Useful for Patients

During my session, “Beyond the Jargon: Making Research Clear, Relevant, and Useful for Patients,” we explored practical strategies to help researchers, healthcare professionals, and advocacy groups communicate findings in patient-friendly ways.

10 Key Takeaways

1. Turn research into actionable knowledge.

Even the most important research has limited impact if the patient community can’t understand or use it. Dissemination should bridge the gap between scientific evidence and patient comprehension.

2. Dissemination is a moral responsibility.

Sharing research in ways that are accurate, accessible, and empathetic is an ethical duty, particularly when reaching underserved and underrepresented communities.

3. Ask the right questions when planning communication.

Evaluate whether your materials are actionable, inclusive, trustworthy, representative, understandable, and relatable. Each criterion ensures research resonates with real patients’ experiences.

4. Use plain language and cultural relevance.

Translate complex research into plain language. Simplify jargon (e.g., explain “biologic TNF inhibitor” as “a medicine that targets a protein that causes inflammation”) and tailor content to reflect diverse cultures, family structures, and beliefs. Learn more about communicating research by clicking on some of our articles like this one on tumor necrosis factor.

5. Make research human and relatable.

Don’t let research stay abstract — this is about real people and their very real, everyday experiences. Incorporate patient quotes, short stories, and practical examples that show how findings connect to daily decisions like managing fatigue or discussing new treatments with a doctor.

6. Summarize research in clear, patient-friendly terms.

Don’t assume everyone understands the jargon — but also don’t assume they aren’t interested in the science. Create short, plain-language summaries that explain what the research means for those who it serves: the patient community. Include links to the original studies so readers can explore more if they choose.

7. Use visuals to reinforce key takeaways.

Want to be truly inclusive? Remember that everyone absorbs information differently and has unique preferences. Infographics and images can distill complex findings into quick, engaging visuals that make research easier to understand and remember. Use real-life photos that reflect diverse patient experiences and avoid generic stock imagery.

8. Leverage multimedia formats for broader reach.

Videos, short reels, and podcasts featuring physicians, researchers, and patients discussing study results make research feel personal and relatable, helping audiences connect emotionally and intellectually.

9. Share through patient-friendly channels.

Articles on platforms like CreakyJoints, along with newsletters and emails that contain one clear call to action, can guide patients toward practical next steps — such as exploring resources or talking with their healthcare provider.

10. Advance equity and empowerment by distributing patient-friendly research summaries.

Sharing research in relatable terms not only improves understanding and trust but also ensures that all patients, regardless of health literacy, can benefit from new discoveries.

New Rheumatology Research with Real-World Impact

Beyond our panel, ACR 2025 showcased incredible new research that patients will want to know about — studies on why earlier intervention for autoimmune diseases is important and the barriers to it, advances in remission monitoring, and the expanding use of biologics and targeted therapies, including exciting and groundbreaking new therapeutics that are changing the field of rheumatology rapidly.

Encouraging Updates!

 

Progress Through Partnership

GHLF is a proud partner in more groundbreaking research presented at this year’s ACR Convergence.

Evaluating Familiarity and Knowledge Gaps in Polymyalgia Rheumatica Among Public Health Professionals
Presenting Author: Erik Stone
Presentation Type: Poster
Session: Vasculitis – Non-ANCA-Associated & Related Disorders Poster II
Date: Monday, October 27
Time: 10:30 AM – 12:30 PM CT
Abstract ID: 2130107

Evaluating User Engagement and Real-World Impact of a PMR-Specific Digital Symptom Assessment Tool: A 12-Month Analysis of PainSpot™
Presenting Author: Dr. Shilpa Venkatachalam
Presentation Type: Poster
Session: Measures & Measurement of Healthcare Quality Poster II
Date: Tuesday, October 28
Time: 10:30 AM – 12:30 PM CT
Abstract ID: 2128050

Patient Preferences for Treatments of Rheumatoid Arthritis: A Discrete Choice Experiment Evaluating Preference for Advanced Drug Therapies and Neuroimmune Modulation Device
Presenting Author: Dr. Jeffrey Curtis
Presentation Type: Poster
Session: Patient Outcomes, Preferences, & Attitudes Poster I
Date: Sunday, October 26
Time: 10:30 AM – 12:30 PM CT
Abstract ID: 2124194

Can LLMs Categorize Patient Priorities Like Humans? Comparing AI and Human Coders in Arthritis Nominal Group Discussions
Presenting Author: Dr. Melissa Mannion
Presentation Type: Poster
Session: Patient Outcomes, Preferences, & Attitudes Poster II
Date: Monday, October 27
Time: 10:30 AM – 12:30 PM CT
Abstract ID: 2110519

Lifestyle Coaching in Psoriatic Arthritis: Pilot Findings from an Online eCoaching Program 
Presenting Author: Judy Zhang
Presentation Type: Poster
Session: Patient Outcomes, Preferences, & Attitudes Poster I
Date: Sunday, October 26
Time: 10:30 AM – 12:30 PM CT
Abstract ID: 2130782

Development of a Culturally-Tailored Storytelling Intervention to Improve COVID-19 Vaccine Uptake in Black and Latinx Patients with Autoimmune and Inflammatory Rheumatic Diseases (NIH-sponsored UAB Project)
Presenting Author: Dr. Maria I. (“Maio”) Danila
Presentation Type: Poster
Session: Healthcare Disparities in Rheumatology Posters
Date: Monday, October 27
Time: 10:30 AM – 12:30 PM CT
Abstract ID: 2128210

Artificial Intelligence Applied to Patient-Reported Outcomes and Passive Physiologic Sensor Data Can Accurately Classify Low Disease Activity in Rheumatoid Arthritis Patients (UAB)
Presenting Author: Dr. Jeffrey Curtis
Presentation Type: Oral
Session: Abstracts: Health Services Research
Date: Monday, October 27
Session Time: 1:00 PM – 2:30 PM
Presentation Time: 2:15 PM – 2:30 PM CT
Abstract ID: 2130963

Translating Research into Care: Effectively Disseminating Research Findings to Patients
Presenters: Dr. Jasvinder Singh, Dr. Kristine Carandang, Shelley Fritz
Presentation Type: Oral
Date: Tuesday, October 28
Session Time: 4:40 PM – 5:00 PM CT

Patients as Research Partners: In Their Own Words

Being on the ACR stage reminded me why patient voices are essential at every level of rheumatology research. When patients speak, we change the conversation. We move from being subjects of research to partners in it. We urge the scientific community to continue listening to us closely — the insights and data drawn from our lived experiences are unlike anything else out there. Kristine and Ela share why patient representation at ACR is so important.

Kristine Carandang, PhD, OTR/L. Co-Lead, Young Patients’ Autoimmune Research & Empowerment Alliance

Dr. Janet Poole, OTR/L, FAOTA and Kristine Carandang, PhD, OTR/L

“It has been a particularly stressful year for patients, healthcare, and health research – something that was especially evident in this year’s conference emphasis on managing burnout. That’s why I still felt it was so important to come to ACR Convergence 2025 and be among peers who are all researching and sharing solutions to help us keep moving forward.

I was honored to speak on three presentations this year about including patients’ perspectives in rheumatology programs. Despite many initiatives, patient inclusion remains insufficient. I continue to advocate for intentional collaboration to address ongoing challenges affecting patients. For me, the most valuable part of Convergence is making multi-disciplinary connections and gaining energy and ideas for our work. I’m privileged to attend each year and hope more patients can participate.”

Ela Chintagunta, Patient Partner and Young Patients’ AREA Council Member

“Presenting at ACR 2025 was both humbling and empowering for me as someone with juvenile onset rheumatoid arthritis since thirteen. Being part of the session, “Supporting Work, Supporting Health,” gave me the chance to share how arthritis shaped my journey: from finding jobs that fit my health needs to redefining my career and daily decisions. I spoke about the hidden realities and extra calculations patients face, and how those experiences influence my work and advocacy. I chose ACR because it’s vital for researchers and healthcare professionals to hear directly from patients, not just data, but complex individuals with stories that research can’t capture.

Diverse voices add context to science and remind everyone why their work matters. I hope sharing my perspective encourages clinicians and researchers to collaborate with patients, both in clinics and at conferences. This visibility makes a difference—not only for me but in fostering systemic change. Connecting with others at ACR, whether professionals or patients, helps me feel recognized and shows that my experiences can inform practices and policies supporting people with rheumatic diseases. For me, presenting is not just about sharing my story but reminding the medical community that patient voices should be at the heart of decisions impacting us.”

Your lived experience can shape research.

Ready to share it?

Living with a rheumatic condition gives you insights that researchers and clinicians can’t get anywhere else. Your story, your questions, and your day-to-day experiences can help guide the next generation of research — not just advancing science, but improving understanding for everyone in our community.

If you’re curious about partnering with researchers or about submitting a patient perspective poster at next year’s conference, we’re here to help. Reach out to us anytime at support@ghlf.org for guidance. You can track your symptoms, manage medications, and share data with your doctor through the free PatientSpot app.

Catch the Energy of ACR!

Download the FREE Playbook!

Tune into our conversations with the experts and advocates leading change in rheumatology. You’ll hear what the latest science means for people living with autoimmune and inflammatory conditions. View our ACR 2025 Video Playlist on YouTube.

GHLF’s PCORI-funded Dissemination Playbook for Patient Advocacy Organizations, offering free guidance on sharing patient-centered CER. Developed with patients, clinicians, and advocacy leaders, it demonstrates how collaboration can turn research into useful resources for health management. Download it here.

 

Explore More of Shelley’s Articles, Podcasts, and Audio Guides

If you’d like to hear more from Shelley Fritz, we invite you to explore her other work. As a patient partner in research, Shelley brings the real experiences, questions, and concerns of people living with chronic conditions directly into conversations with researchers. Through her interviews with patients for articles, podcasts, videos, and audio guides, she elevates the insights that matter most. Her work helps bridge the gap between lived experience and scientific discovery.

Articles

Podcasts & Audio Guides

Let’s Get Personal Podcast

The Psoriatic Arthritis Club Podcast & Audio Guides

Informed Immunity Podcast

 

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