I was diagnosed with rheumatoid arthritis at 29 – back in 2015, and at the time, I had never knowingly participated in any research study. When I joined the Arthritis Research Canada Arthritis Patient Advisory Board in 2018, I was still relatively new to the disease—just three years into my diagnosis. But I was already deeply involved in advocacy. My blog, Chronic Eileen, had been recognized as one of the top arthritis blogs, and I was writing for platforms like CreakyJoints and Healthline, sharing my lived experience and raising awareness about rheumatic diseases.
I joined the advisory board and became a patient partner in research because I was desperate to understand what was happening to my body. RA is confusing, overwhelming, and so is being surrounded by misinformation online and all the unsolicited advice I’d receive. I wanted answers—not just for myself, but for others navigating the same uncertainty. What I didn’t expect was how profoundly this decision would reshape my life—not only in how I manage and understand my disease, but also in how I’ve grown professionally as a patient advocate.
Background: My Experience in Research as a Patient Partner
Over the years, I’ve worn many hats in research—as both a patient partner and a study participant. My contributions have spanned every stage of the research process, from design to dissemination.
There is a difference between patient research partner and patient participant in research. I have been involved in both, however my role is more of a patient research partner because I am on an advisory board and have done quite a bit in the research landscape rather than solely as a subject of research.
Patient Research Partner – A collaborator in research. They work alongside scientists and clinicians to help design studies, choose outcomes that matter to patients, interpret findings, and improve communication. They contribute lived experience and strategic input throughout the research process.
Patient Participant – A subject of research. They take part in a study (for example, by receiving a treatment, filling out surveys, or giving samples) but don’t shape how the study is designed or conducted.
The key difference: a partner helps create research, while a participant takes part in it. Partners influence what gets studied and how, while participants provide the data that make the study possible.
Some of my roles
I’ve spoken at scientific conferences, co-presented study findings, and offered patient perspectives in the development of clinical guidelines – including the 22 Integrative Treatment Guidelines for RA. My work has also included knowledge translation, survey design, and participation on peer review panels—always with the goal of ensuring research truly reflects patient priorities, lived experience, and accessible language. I am not an academic you see.
- Disseminate research findings through my writing and my podcast Rheumer Has It.
- I’ve co-developed engagement and study materials such as the CIHR-IMHA PERA modules and the Arthritis Research Canada Education Series and Newsletter. I’ve also co-presented findings at conferences.
- Reviewed grant applications that have both been rejected and accepted
- I have advised on recruitment strategies and collaborated on recruiting patient participants
- I’ve spoken at a number of scientific conferences – Including submitting three sessions I created or co-created at ACR that have been accepted. This is in fact my 7th ACR.
- Provided patient insights on guidelines
- I’ve contributed to knowledge translation, survey design, and peer review panels, ensuring that research reflects real patient priorities and language.
Why Patient Engagement Matters: A Patient’s Perspective
When I first stepped into research, the landscape was in full speed toward a more inclusive and collaborative model—one that sees patients not as passive subjects, but as essential partners. The Arthritis Patient Advisory Board at Arthritis Research Canada was the first institute to have a patient advisory board, founded over 25 years ago. To be part of something so pioneering and impactful is incredibly meaningful to me.
By Definition: Patient engagement in research refers to the meaningful involvement of individuals with lived experience throughout the research process. This approach ensures that their perspectives, priorities, and insights shape the design, execution, and dissemination of research, ultimately making it more relevant, effective, and applicable to real-world healthcare we receive.
It also ensures research is not just scientifically sound but clinically and personally relevant.
So what does patient engagement in research mean to me? It means hope.
You must always remember that your participants and partners are living with the challenges you are studying. While you can go home and not think about arthritis, I can’t turn off thinking about it because I live with it, I feel it every second of every day. It also gives us something to be proud about when disease has often taken away so much from us.
From the patient perspective, engagement offers a sense of agency, validation, and the opportunity to influence research that may directly impact our lives.
What To Avoid In Patient Engagement
Two issues can deeply affect patients involved in research: tokenism and power imbalances. It took me years to understand what these terms really meant—longer still to recognize that I had experienced them—and even more time to feel safe re-engaging as a patient partner.
In many research settings, I heard these terms mentioned with a quick basic explanation but rarely dived deep into them, they seem more like buzzwords than important topics to cover thoroughly. Yet both tokenism and power imbalance can quietly erode trust and make patients feel small, unheard, or even exploited.
Tokenism: Inclusion Without Influence
One of the greatest risks in patient engagement is tokenism—when patients are invited to take part but without meaningful influence in the stages that matter most. For people like me, whose lived experience is the very subject of research, tokenism isn’t just disappointing; it’s wounding.
When I’ve experienced tokenism, it left me feeling used, unintelligent, and disconnected from the process with little to offer. It drains purpose and hope, breeding distrust between patients, researchers, and the institutions meant to serve both.
Examples of Tokenism
- Minimal representation: including just one patient or community member for optics.
- Lack of influence: limited voice in decisions or agenda-setting.
- Optics over substance: inclusion meant to look progressive, not to be meaningful.
- Stereotyping: expecting one person to speak for an entire group.
- Patient and Public Involvement (PPI): Including patients to meet funding requirements without integrating their insights into study design or outcomes.
- User Involvement: Inviting patients to advisory roles but disregarding their feedback.
- Diversity Optics: Highlighting diversity in promotional materials while excluding those same individuals from authorship or leadership.
Tokenism is harmful because it hides the need for real change and places unfair pressure on those tokenized. It’s the difference between checking a box and sharing purpose.
- It disempowers and alienates participants.
- It skews research outcomes away from real-world needs.
- It conceals deeper inequities in who gets to lead, publish, or be heard.
I’m going to talk a little bit about some personal versions of tokenisms I have experienced and that bother me.
A diversity check mark – I have some unique diversity as a patient partner in research – Most patient partners are white women, university educated, married and in their 60. Even though I cover some of the 4 Ws, I am definitely not wealthy and fall into the low income bracket as rheumatoid arthritis landed me on disability at 29. I am a single mother and I don’t have more education than an esthetician diploma. I don’t like being invited to the table because my diversity ticks a box on your to do list. I would also add another w to that list – well controlled disease, which I do not have. I actually have a long list of social determinants of health that lead to poorer outcomes, and I see it when I engage with other patients who are usually involved. I don’t think some people realize the privileges they have.
Used for who I am, not what I can offer and no relationship building – I have a larger social media following. This has come with a lot of perks, but it also comes with some disadvantages and one of those is feeling used. One way to build relationships and trust with patient leaders like me, is to engage with us online. When someone asks me to share their work or help with recruitment but never engage with me, support the other work I am involved in,invite me to work with them in projects, it makes me feel like my work as a content creator advocating for arthritis doesn’t matter.
Example: I’ve built myself a platform on social media. There is an organization that constantly tags me in social media posts for me to share or to use my name for search optimization for them. I don’t think I have ever seen them like or share any of my work. They never engage me, and rarely include me in their projects. They just want access to my platform that I authentically built showcasing the struggles I experience with this disease.
This would also not only be tokenism but a sign of power imbalance.
Power Imbalances: When Hierarchy Silences Voices
The problem with power imbalances is that they quietly undermine collaboration. They occur when researchers hold more control, authority, or decision-making power than the participants or partners involved. This shapes whose voices are heard, whose priorities drive the study, and how results are interpreted or shared.
Power imbalances stem from differences in authority, expertise, access, and resources. Researchers often control funding, design, and publication, while patients lack the same institutional standing. Social factors—education, income, race, gender, relationship status, disability, or health status—can deepen those gaps.
Even well-intentioned teams can reinforce imbalance by treating lived experience as less valuable than academic knowledge, using jargon that excludes, or making decisions without shared accountability. At its core, it’s about who decides what counts as knowledge—and who doesn’t.
I remember feeling that imbalance as a patient research partner in a project several years back. My input was brushed off – often with a “that’s nice” ,“thanks for sharing” or passive aggressive comments towards me.
One time I even suggested a way to make their text more readable and was met with “well, I don’t like it that way”. At 38 I was diagnosed with ADHD, there is a reason those broken up paragraphs I was suggesting because they help me read and concentrate easier. I also learned this writing for major platforms like Healthline. While they had an academic background, I was providing my input as a content creator.
Other things I noticed were I was often invited last, and I didn’t feel I added value, during presentations and events I would see engagement between other members on whatever we were involved via social media, back then twitter wasn’t dead, with me often left out or tagged last. I was not invited back to the table, but their friends were – remember power imbalances include deciding who’s at the table.
I struggled to understand or participate in discussions but didn’t feel safe admitting it because I’d already been made to feel small when I did engage. I also noticed in the email chains, I rarely had time to provide my input because others were often faster to respond and more experienced in patient engagement. I felt that my education level, finances, time constraints because of work and being a single parent, and active disease, were a burden on the team. I couldn’t keep up.
Does that mean the voices of those well educated, wealthy, married, retired white women only matter because they are the easiest to engage?
Later, I learned that some team leaders had spoken poorly about me behind my back and I was being excluded from opportunities. It wasn’t just one patient partner I heard this from, but two, with one approaching me because they noticed the disrespect I was receiving during the project.
That broke my trust in researchers and institutions for a while—I nearly walked away from patient partnership altogether and it took me a few years to heal from it. I am glad I didn’t give up and that I have been able to use my experiences as a way to actually give a voice to tokenism and power imbalances rather than them just being buzzwords.
Bureaucratic power imbalances can also be important in patient engagement. When rigid institutional rules, hierarchies, and approval processes dominate, they limit how and when patients can contribute. This kind of red tape discourages and excludes influential voices, and signals that patient voices are secondary to procedure and trivial rules. Bureaucracy protects systems more than relationships — creating distance where genuine partnership should grow and thrive.
Researchers and institutions must actively recognize these dynamics and work to level them. This means sharing leadership, co-creating goals, and using accessible language, and compensating patient partners fairly. Make space for lived experience to inform real decisions. Encourage open, honest dialogue. Inclusion isn’t about being present—it’s about being heard, respected, represented and empowered.
It also means acknowledging the emotional labor patients contribute and building systems that value it – especially in areas like mental health, rare disease, or trauma. Your patients are going to come from diverse backgrounds.
Remember To Use A Trauma Informed Approach
I’ve been a patient partner in research for a while now — even when life turns into a bit of a disaster. During that time, I’ve faced all kinds of trauma: medical trauma from procedures gone wrong and harmful side effects, physical trauma from a fall down a flight of stairs that took six months to heal and changed the course of my disease, and personal trauma that’s shaken my confidence, energy, focus, and motivation. Stress and trauma take a real toll on my health — and so do anxiety and depression when they spiral. Participating in research shouldn’t make these emotions worse.
I am also what I call a product of ACES – Adverse Childhood Experiences (ACEs) are stressful or traumatic events that occur before age 18—such as abuse, neglect, or household dysfunction—that can have lasting effects on a person’s health, behavior, and well-being throughout life.
What I experienced as a child often leads to chronic illness, which has been very healing for me to understand but it definitely had an impact on my personality, my health, my confidence, self esteem, quality of life and how I take care of myself.
Many research questions I have answered have made me reflect back on my past traumas and can bring up some negative emotions or fear of judgement.
I remember one time I was in a prep call for a presentation I was doing with a researcher, she asked me how my disease was doing and I burst into tears. Just days before I had a call with my rheumatologist who told me that I was almost in remission, but my medication had failed me and my disease was back to being severe. Thankfully the researcher on call was a psychologist, so she knew how to calm me. She told me that it was okay to be emotional. She validated my feelings. Grief doesn’t just happen at the beginning of our diagnosis with a rheumatic disease, these are chronic diseases, the losses are continuous throughout our lifetime.
Researchers can add a trauma-informed approach to patient engagement by building safety, trust, and choice into every stage of their work. That means:
- Prioritize emotional safety. Create environments—virtual or in-person—where patients feel secure, respected, and free from judgment. Begin meetings with clear expectations and offer opt-outs without penalty.
- Recognize emotional labor. Discuss how engagement might stir difficult memories and offer support resources when needed.
- Use empathy-based communication. Avoid clinical detachment; listen actively, validate lived experience, and use plain, compassionate language.
- Train research teams. Provide trauma-informed practice training so everyone understands how trauma can shape communication, trust, and behavior.
- Reflect on personal bias. Be aware of how assumptions about patients’ backgrounds, abilities, or emotions can shape interactions and decisions—commit to ongoing self-reflection and correction.
Best Practice: Supporting Patient Partners & Participants
Living with arthritis means unpredictability. Our health will sometimes get in the way and is a huge barrier for participation—there’s no avoiding it – I learned this the extremely hard way and it’s taken me a while to learn how to engage as a patient partner with my disease and as it progresses. I am one of those lucky ones who have refractory rheumatoid arthritis.
Life with arthritis is bumpy, difficult, and often overwhelming. There’s not a single day when I’m unaffected: fatigue, pain, and brain fog are constant companions. Each morning I have to map out how I’ll spend my limited energy. My to-do list is usually longer than what I can realistically finish, but I try my hardest.
Don’t exclude patient partners who are struggling with their health. If everyone on your team is in remission or low disease activity, you’re missing the very voices that represent the hardest-hit members of the community.
What helps me stay engaged as a patient partner when I’m unwell:
- Gentle reminders because I can be forgetful or sometimes I put things off to do when I feel better or more clear but I can never guarantee when that is.
- Flexibility—extra time and no last-minute tasks that require a heavy workload. Keep in mind that taking care of chronic illness is a full time job itself.
- Understanding and empathy when we are struggling
- Plain-language communication
- Note-takers during meetings or recording the meeting to view later
- Ask what they prefer: Meetings instead of long email chains – My life is hectic, I am a single mom, I have multiple health issues, I work part time, I volunteer a lot, and I am a caretaker to my elderly father who’s going through multiple myeloma – sometimes I just don’t have the time, cognition or energy to go through and write out emails. This is where you should be asking your patient partners how best to engage them.
- Always include a break in meetings over one hour.
For patient participants:
- Use technology that supports accessibility (e.g., text-to-speech) – One thing I wish is for those super long surveys that I need to fill out had options for me to listen to the questions instead of reading all of them. The other day I was having a rather bad day with RA and I struggled to read the recipe on a waffle mix box. Remember that arthritis is more than just joint pain.
- Keep surveys short and allow participants to save and return later
- Send reminders and give generous timelines
- Recognize that certain times of year—like holidays or summer—are harder for engagement
Best Practice: Include Multiple Perspectives
Successful engagement begins with identifying diverse patient partners—individuals who bring lived experience, curiosity, and a willingness to collaborate. Partners may be patients, caregivers, or community advocates.Include multiple patient partners to bring varied perspectives and reduce individual burden. Pairing new and experienced partners encourages mentorship and strengthens collaboration. Remember cultural inclusion: Make space for diverse perspectives to guide decisions.
Engage From Start To Finish
Start early. The strongest partnerships begin not after protocols are written, but from the first spark of an idea. Early involvement means inviting patients to help set priorities, design studies, and define outcomes that genuinely matter to those living with the condition. Some patients can also support recruitment, helping connect research to real-world communities. They can provide input on recruitment materials to make sure they are clear, concise, and easy to read.
Patients should be invited to help shape the research question, not just review it after it’s formed. To embed patient partnership throughout the research process, consider the following:
- Co-designing research questions and protocols
- Including patients in ethics reviews and grant applications
- Collaborating on data interpretation and dissemination
- Using evaluation tools to assess the quality of engagement
- Recognition matters. Patient partners should be acknowledged in publications, presentations, and funding reports. Their contributions—whether in shaping research questions or interpreting results—are integral to the success of the project.
Researchers should also be open to adjusting the study or dissemination of results based on patient feedback—even midstream. I have an example why this matters.
Example: I was involved in a big project with some researchers that were building a website that would be useful for patients with RA. They engaged patients really well until publication of the website. The issue was they did not ask for our feedback on the finalized version of the website and used AI images for people living with rheumatoid arthritis. Many of the patients on the project really didn’t like that. It took away the authenticity of engaging real patients. They listened to our feedback, but now they have to redo a lot of the project after publication because they did not check with the patient partners first.
Best Practice: Offer Supporting Tools and Strategies for Meaningful Engagement
Your different patient partners should have areas they feel strong in and areas where they need more support on. Provide resources to patients so they have an understanding of research and how to engage with researchers.
Key strategies include:
- Building skills for both researchers and patients: Training in communication, research literacy, and collaboration ensures that all parties can contribute effectively. At the end I have a big list of resources for you and a link so you can access them all.
- Allow time for patients to get comfortable with participation and the process of research.
- Mentoring and relationship-building: Long-term partnerships thrive on trust, mutual respect, and ongoing support.
- Addressing barriers: Medical jargon, time constraints, compensation, accessibility, and power dynamics must be acknowledged and addressed to foster equitable participation.
- Compensating patients for their time and expertise also shows respect and value.
- Build trust that lasts – Partner with community organizations, if you belong to an institute or organization create a patient advisory board
It’s important to build long-term relationships—not just transactional ones—is key. Real trust comes when researchers are willing to learn from—and with—the communities they serve.
- Start early – involve patients from the idea stage.
- Be transparent – clarify goals, roles, and decisions.
- Co-create goals – focus on what truly matters to patients.
- Diversify voices – include varied experiences and backgrounds.
- Value lived experience – treat it as equal to clinical expertise.
- Communicate clearly – use plain language, avoid jargon.
- Be flexible – allow time and adapt to health needs.
- Acknowledge contributions – credit and compensate fairly.
- Build trust – foster respect and inclusion.
- Close the loop – show how patient input shaped outcomes.
Patient Engagement in Research Resources For Patients and Researchers
PCORI (Patient-Centered Outcomes Research Institute) provides a guide for involving patients as partners in research, featuring an Engagement Rubric and training modules on Research Fundamentals.
https://www.pcori.org/engagement/engagement-rubric
CIHR SPOR – Strategy for Patient-Oriented Research Canada’s national initiative to promote patient–researcher partnerships. Offers training and compensation guidance for patient advisors.
https://cihr-irsc.gc.ca/e/41204.html
CIHR-IMHA – Institute of Musculoskeletal Health and Arthritis – A research institute with opportunities for patient engagement training research for both patients and researchers.
https://cihr-irsc.gc.ca/e/45851.html
EULAR PARE – Community and Training Modules – EULAR’s patient engagement division providing education, advocacy, and research training for patient partners.
https://www.eular.org/the-eular-pare-community
OMERACT – Outcome Measures in Rheumatology – Comprehensive handbook on involving patient partners in developing outcome measures and consensus-building in rheumatology research. – https://omeract.org/handbook
Arthritis Research Canada (ARC) – PEIRS (Patient Engagement in Research Scale) – A validated scale that measures the quality of patient engagement in health research from the patient’s perspective. -https://www.arthritisresearch.ca/peirs/
Programs To Help You With Plain Language and Making Accessible Content
- Contrast Checker: to improve accessibility & overall visual impact
- Vischeck: to check for colour blindness accessibility
- Simple Writer: for checking for plain language and readability of your work
- Envision the Patient Plain Language Summary (PLS) Toolkit: for creating PLSs
- Readability Formulas: readability assessment tool with 7 different metrics
- De-Jargonizer: for making your content accessible through vocabulary simplification
