Chronic Eileen

Session Title: Leveraging the Patient Voice to Improve Clinical Care and Rheumatology Research

Session Description: 

Patients, researchers and patient organizations play a vital role in developing research partnerships. The session aims to explore the transformative impact of integrating the patient perspective into Topic: How does a patient partner get involved when they have no academic background? Making research participation more inclusive for everyone.Patients, researchers, and patient organizations are essential in developing research partnerships.

Title of My Presentation: – How Does a Patient Partner Get Involved When They Do Not Have an Academic Background?

Learning Topics:

• Explore the benefits of involving diverse patients in research and potential impact of patient participation on their knowledge and skills
• Understand factors that motivate or deter patients from participating.
• Insight into how to effectively engage non-academic patients in research.

Patient partners, individuals living with arthritis, play a crucial role in ensuring that studies are relevant, meaningful, and truly patient-centered. But for those without an academic background, getting involved may seem daunting. How can patient partners without an academic background contribute, and what support do they need to thrive in this role? Let me tell you my story about how I became a patient partner in research. 

In 2015 at age 29, as a single mom to a 2 year old boy and esthetician in Vancouver, I was diagnosed with rheumatoid arthritis (RA). Symptoms had started around age 23, but took years to diagnose. My teenage depression diagnosis in the early 2000s didn’t lead to proper treatment until my RA diagnosis. I often wonder how earlier care might have changed my life path. You see, chronic illness started earlier for me, in my teens I struggled with anxiety and depression, which prevented me from having the confidence in myself to pursue academia. 

In 2017 I started my blog Chronic Eileen as a way to cope with my illness and learn more about it.  I’ve always had an interest in writing but I didn’t really know what to write about until I was diagnosed with rheumatoid arthritis. Fed up that people didn’t understand that my disease was serious and extremely difficult to navigate, I set out to make change. Creating my blog has been one of the most rewarding experiences that I’ve ever had as it opened many doors for me. Best of all is that hundreds of patients have messaged me to tell me that my writings have helped them in some way or other.

I really wanted to make sure that the information I was providing in my blog was accurate, especially since I do not come from a healthcare background or academia background. Dr.Google is hard to navigate but patients are going to use it. In 2018 I joined the Arthritis Research Canada patient advisory board. A big reason was making sure I was involved in the research was a way for me to make sure that I was not spreading any misinformation about living with rheumatoid arthritis. Not only did I have accurate information so I thrive better with my rheumatoid arthritis but I wanted others in my community to have this information too. 

Arthritis Research Canada is one of the first Research Institutes that created a patient advisory board to further advance research and care for people living with arthritis. For the last 25 years Arthritis Research Canada has really paved the way for patient engagement in research not just in the arthritis community but in health research across many different conditions.

In many ways I feel privileged that I was diagnosed with arthritis while living in Vancouver British Columbia Canada because this is where the head office of Arthritis Research Canada is as well as the University of British Columbia is. I especially find this a privilege because there are areas in my country that have no rheumatologist and patients need to travel 14 hours to see a rheumatologist.

Without diverse patient partners, arthritis research risks focusing on academic questions that may not be relevant to real patients’ lives. Involving patient partners helps create outcomes that truly reflect the treatment success most relevant to those living with arthritis.

Inclusion of diverse perspectives is crucial for several reasons:

• Comprehensive Understanding: Ensures research findings are applicable to a wider audience.
• Equitable Health Outcomes: Tailor interventions to the unique needs of various groups.
• Improved Trust and Engagement: Builds greater trust among underrepresented groups.

Patient partners provide valuable insights that improve study designs by identifying potential 

issues with recruitment, retention, and adherence. Their input helps create more realistic and patient-friendly protocols, increasing the chances of a study’s success. They also help prioritize research goals to address the most important issues for those with arthritis.

Involving patient partners from diverse backgrounds ensures the research focuses on the needs and experiences of everyone impacted by the disease. This is crucial because arthritis is a leading cause of long-term disability worldwide. Diverse perspectives help identify the distinct challenges different communities face, leading to more inclusive and effective treatments. This approach advances healthcare equity and boosts the research’s relevance and impact, enhancing the quality of life for all arthritis patients.

As someone who is single parent, low income, has a lower level of education, all the social determinants of health suggest that I will have poor outcomes with my disease. True diversity, equity, and inclusion (DEI) in research should encompass all aspects of diversity, including socioeconomic status, education level, and other less visible factors. When research primarily engages with participants who have higher education and better socioeconomic conditions, it risks creating findings that are not fully representative of the broader population, potentially leading to health disparities. It’s a reminder that diversity goes beyond what we can see and includes the many facets of human experience.

Please Avoid

• Power Imbalances: Feeling like your input is undervalued or overlooked compared to professionals, especially when it comes to professionals who also live with the condition.
• Tokenism: Sometimes, patient partners are included just to tick a box, without their input being genuinely valued. Please avoid this superficial involvement. Engage with us truthfully, do not let us feel like a revolving door 

Remember Compensation: Fairly compensate patient partners for their time and contributions. This shows us our value and helps us live healthier lives. 

There is nothing in my life that my chronic disease doesn’t touch in some aspects. Navigating your health while being a patient partner can indeed present several challenges. Here are some key barriers and considerations for researchers to understand, along with ways they can help:

Symptoms and Health Challenges

What Researchers Need to Understand:

• Fluctuating Health: Symptoms can vary day-to-day, impacting your ability to participate consistently. Understand that health issues may prevent engagement at times. It’s also important for researchers to understand that patient partners may need flexibility due to their health conditions. Please don’t give up on us if we are unavailable sometimes.  It’s important to also remember that many forms of arthritis are progressive so over time we may have new struggles  or need to take breaks from participation. 
• Energy Levels: Chronic conditions often come with fatigue, making it hard to engage in lengthy meetings or tasks. Fatigue is the hardest symptom for me to navigate and fatigue does present a challenge for me while participating in research.  The higher my fatigue the higher my cognitive dysfunction,  and let me tell you trying to understand medical jargon when you’re experiencing brain fog is a whole new level of confusion.
• Emotional Toll: It takes courage to be a patient partner in research. Constantly discussing your condition can be emotionally draining. Let’s not forget a large number of patients living with arthritis also live with anxiety and depression, my mental health struggles do impact my involvement with research at times. Learning scary facts about the condition you live with can also be difficult to cope with. 
• Different Learning and Communication Preferences: A lot of us have different learning and communication skills, reading email after email and long pdfs to me are honestly overwhelming when not feeling well.  Please consider recordings  for those that may want to reduce reading off screens. 

• Flexible Scheduling: Allow for flexible meeting times and deadlines. Give us a decent amount of time to complete tasks, especially larger tasks. 
• Remote Participation: Offer options for virtual meetings to reduce the physical strain of attending in person. However, if possible, the patient would prefer to offer in person meetings to avoid the participation feeling too clinical and to build stronger relationships. I don’t get out much because of my rheumatoid arthritis so I really enjoy being able to get out of the house. It helps with the isolation and loneliness that chronic disease causes  and I feel more connected to my community. 
• Preferences: Ask your patient partner their preference and also consider that meetings online patient partners might want to have their camera off.
• Pacing: Break tasks into smaller, manageable parts.  If you have a meeting over an hour, please include a break for patients to get up and move. Sitting for long periods of time with arthritis can be painful. 
• Meeting Notes – Have someone take notes and send a meeting recap and/or a recording. This really helps if we miss a group meeting or if we are experiencing cognitive dysfunction. It also helps reduce pain for us by not having to take notes. 

While an academic background isn’t necessary to be a valued participant in health research, having some understanding of research basics is helpful. It is important that organizations offer training for patient partners and these programs cover key concepts, explain the research process, and discuss the role of patient partners. You need to equip patient partners with the knowledge and confidence to effectively contribute. I do believe that experience over time has been the most valuable way for me to learn how to be a strong research partner. Each time I am invited to the table, I learn something or I am able to contribute something to the research process. 

I’ve had to develop a thick skin being a patient partner in research. Resilience is crucial to handle potential dismissiveness or undervaluation of your contributions when experiencing tokenism or power imbalances.  I’ve also had to find the courage to share what’s wrong with me to complete strangers.  I’ve had to develop the confidence to walk into a room full of academics and say hey I’m not nearly as educated as you,  and let me tell you that is extremely intimidating. 

For patient partners to succeed, researchers must fully include them as equals. This means clearly explaining complex research concepts, valuing their input, and keeping them updated on the study’s progress. Please don’t assume that we know what you’re talking about,  it’s okay to ask us where our knowledge in health research might be. I am also going to suggest involving patients at the beginning of the study design, to enhance your research and to also to mestore patients through the research process. 

I remember sitting in a research focus group where the researcher was going on about Delphi scales, randomized controlled trials and other common words in health research, being new to health research I have never heard these terms before. It’s really important to remember to explain things at a 9th grade level. At first I was too  intimidated to raise my hand and ask what are you talking about, however over time I’ve learned there are no wrong questions to ask.  Here at ACR 24 I am a social media ambassador and I’m going around asking researchers to explain their research as if explaining it to my 11 year old son. How about that for gaining confidence?

Getting Us Through Medical Jargon:

• Clear Communication: Use plain language and avoid scientific jargon unless you are going to explain it to us while you use it. Not all patient partners will be familiar with complex medical terminology.
• Supportive Environment: Create a supportive atmosphere where patient partners feel comfortable expressing their limitations.
• Education and Training: Researchers should provide resources to help patient partners understand medical terms and concepts. Offer training sessions to help patient partners understand the research process and medical terminology.
• Mentorship: Being mentored by researchers and other patients involved- knowing the right questions to ask and building confidence to ask questions or participate in research. I really have to thank Arthritis Research Canada researchers Dr. Linda Li, now retired Dr. Catherine Backman, Dr, Jasmin Ma  for helping me understand arthritis research and the value of my engagement in it.

I wanted to end on some of the significant contributions that I feel I have made to the rheumatology community which I say thanks to being a patient partner in research equipping me with knowledge and confidence to be the advocate that I am today. Despite that I may not have an academic background engaging patients like me has a significant value on health research and the arthritis community as a whole, not just in study design or participation:

• I have written over 100 essays for Creaky Joints, this platform is a community favorite with arthritis patients around the globe. My blog Chronic Eileen has continuously been labeled as one of the top arthritis blogs by leading health websites. If you Google rheumatoid arthritis advocate and go to images you’ll see the first person who pops up is me and I also pop up the most often.
• I have a following of around 20,00 on my platforms. There have been times where my social media channels have recruited all patient participants in some sort of research setting.
•  I’ve had many media features and because of my participation in research I felt confident speaking about my disease, especially during the time of the pandemic  and educating people about what it’s like to be immunocompromised. 
• I run support groups for people with arthritis in person and online
• I was involved in the first ever Integrative RA Treatment Guidelines and have been for other guidelines/steering committees. 
• I have attended the Canadian, American and European rheumatology conferences in person and online since 2019. To me that is really cool because it is really hard and expensive for patient partners to get here. This is also not my first time presenting at ACR, in fact this is my third presentation here at ACR 2024 and I have presented three Patient Perspective Posters here at ACR. 
• What will I do next if I am invited to the table?

PERA Modules – Course: A How-to Guide for Patient Engagement in Research

I was a Canadian Institutes of Health Research – Institute of Musculoskeletal Health and Arthritis – Patient Engagement  Research Ambassador (CIHR-IMHA-PERA) Alumni ( 2020 – 2023).  I was involved in the making of  this resource. 

The Canadian Institutes of Health Research’s (CIHR) Institute of Musculoskeletal Health and Arthritis (IMHA)  Patient Engagement Research Ambassadors developed a course with input from patient partners, trainees, researchers. The course includes modules to assist patient partners, researchers, trainees, and other team members in conducting patient engagement in research.IMHA’s. There are modules for patients and modules for researchers.  These modules are also applicable for no matter what country you are from.

Workbook to guide the development of a Patient Engagement In Research (PEIR) Plan

Published in 2018 -This workbook is a collaborative effort between the University of British Columbia and Arthritis Research Canada.

This workbook guides research project teams in planning their activities to facilitate high-quality partnerships between researchers and patient partners. It employs the Patient Engagement in Research (PEIR) Framework, which comprises eight components that outline meaningful engagement in research from the perspectives of patient partners. 

Toward A Trauma- And Violence-Informed Research Ethics Module: Considerations And Recommendations

Trauma-informed research and evaluation prioritize safety, shared power and control, trust, and aim to reduce the risk of retraumatization. It involves conducting research and evaluation on any topic and with any group of people: with an understanding of the impact of trauma and violence, assuming that any participant could have experienced trauma, applying trauma-informed approaches to minimize distress and retraumatization, and having a plan of action if participants become distressed during their involvement.

EULAR recommendations for the involvement of patient research partners in rheumatology research: 2023 update

This article from the Annals of the Rheumatic Diseases discusses the updated 2023 EULAR recommendations for involving patient research partners (PRPs) in rheumatology research. It highlights the evolution of PRP roles since 2011 and provides new principles and recommendations to strengthen their involvement in research projects