The Importance of Clinical Trial Training To Patients and Community – Speech

On Monday February 24th 2025 I gave a speech at the 2025 Clinical Trials Training Summit on why it is important to train patients involved in Clinical Trials. I’m grateful for the opportunity to be opening night keynote speaker, especially on a topic I am so passionate about. Learn more about the Clinical Trials Training Summit

The Importance of Clinical Trial Training To Patients and Community

I’ve been an active member of the Arthritis Research Canada Patient Advisory Board since 2018 and served as a Patient Engagement Research Ambassador with CIHR-IMHA from 2020 to 2023. My research involvement ranges from being a study participant to a patient partner on research teams and priority steering committees. I have dipped my arthritic toes into as many parts of the clinical trial process and training as I have been able to, always eager to learn more about my disease and health research. 

My education level does not extend beyond an esthetics diploma, and I worked as an esthetician for a decade until rheumatoid arthritis landed me on disability at age 29—right when I entered single motherhood. I have a long list of social determinants that lead to worse health and wellbeing outcomes. Participating in health research has helped me understand these outcomes, accept what I can’t fix, and work towards better outcomes for myself and even in my community.

My research participation is possible because I’ve been continuously invited to the table and treated as an equal by incredible researchers and educators at Arthritis Research Canada. I’m incredibly grateful for the opportunities being a patient partner in research has opened for me and how it has changed my life. Much love to Diane Lacaille and Linda Li.

I met Dr. Linda Li when she was the principal investigator for one of the first clinical trials I participated in. This trial, focused on monitoring RA symptoms with an app and tracking physical activity using a wearable device, transformed my life. This partnership shifted my dynamic from passive acceptance to active participation in both my health and health research. I became fascinated by how patients can become partners in the research process, contributing not just their health data but also their insights and experiences—insights often overlooked because most people don’t want to hear about my health struggles.

I gained valuable insights into my rheumatoid arthritis, improved communication with my clinicians, and became more attuned to my symptoms, including fatigue, stress, mental health, and sleep. Considering I was newly diagnosed when I joined the study, it provided exactly what I needed at that moment. I still apply what I learned to self-manage my disease and speak with my clinicians. 

I’ve volunteered with many organizations since my diagnosis, but volunteering in research means the most to me because the results are so tangible. 

I have had negative experiences as a patient partner in the research landscape.

When I first participated in clinical trials or the training process, I felt isolated and overwhelmed—especially since I don’t come from an academic background. My world previously never involved Delphi scales or double-blind randomized control trials, I was shocked to discover how hard it is to understand what Basic Science is all about, talk about a misleading name. I was incredibly intimidated asking the research team questions to better understand the process and for me to offer them the honesty and authenticity they need from me. Training equips patients with the tools to decode the complex language of clinical trials, making it accessible and understandable to people from all backgrounds.

I’ve experienced tokenism and power imbalances before I really knew what those words meant or how to really explain what I was experiencing. Tokenism and power imbalances seem more like buzzwords in training manuals than training patients to identify them and how to address them when we do experience them. 

There have been times when engagement was difficult for me due to my health as I struggled with fatigue, cognitive dysfunction, and ADHD, or my lack of understanding of what was happening. At times I’ve gotten anxious I was not providing enough or quality input. There is no guide on how NOT to be a patient partner in research. This is something I have had to learn over time and work on my own barriers to participating in clinical trials.  

There have been times where I can tell I am being judged because of my background or my education level. Hierarchies can promote order and efficiency, but they can also create power imbalances and limit opportunities for those at lower levels when we should be seen as an equal. Effective hierarchies balance clear leadership with inclusivity and collaboration with all.

However, I’m here today, speaking comfortably and confidently to you all. I’m able to do this because someone treated my participation in their research as a mentorship, a friendship and collaboration as equals, and not just as another patient through a revolving door.

I have even experienced moments where my participation in a research setting has brought up past traumatic experiences that caused me to have some dark moments during or after research participation.

The important thing is that I have the opportunity to be in a supportive environment when things do encounter difficulties, especially when it comes to my bumpy health or respect as someone with a different background than an academic. When it comes to those collaborating with patients it is incredibly important to approach engaging with kindness, respect, and patience. It’s crucial to have training in trauma informed approaches to engaging patients. 

It has also been important for me to grow as a patient partner in research, identifying my mistakes or gaps where I understand the process. It is important for me to be honest, ask questions, communicate my concerns, and take the time to learn more about research or seek out tools that help me.

Engaging and training a patient like me might take a bit longer than engaging a patient with an academic background but engaging diverse patients like me keeps your research more relevant to the general population and those who’s social determinants of health point to worser outcomes. 

Diversity, equity, and inclusion isn’t just about physically easy to spot diversities. While the majority of participants in health research are middle aged, university educated  white women, one day I will be a middle aged white woman. But that list of social determinants I have is a community which is often not engaged in health research. I am low income, lower education, single parent and disabled.

From a patient’s perspective, the benefits of clinical trial training are clear, but the invaluable insights patients bring to the table shouldn’t be overlooked. Including patients from the start ensures the content is relevant, relatable, and meets our needs. Patients highlight crucial information, effective delivery methods, and address common concerns. We feel like equal participants, not just study subjects.

Trust is the cornerstone of any successful clinical trial. For patients, trust in the research process, in the medical professionals conducting the trial, not just the safety and efficacy of the treatments being tested is paramount.

Patients’ insights on trial participation reveal common fears, misconceptions, and effective communication strategies. Our involvement ensures training materials are accurate and resonate with the audience. Different learning styles, such as those affected by brain fog, fatigue, anxiety, depression, and ADHD, are considered. Patients like me ensure the training is understandable, even when experiencing heightened symptoms or different learning styles. 

It took years for me to feel comfortable engaging with researchers and asking questions that truly matter to me, as it was very intimidating at first. When patients understand the rigorous safeguards in place, the ethical considerations, and the meticulous protocols followed, their apprehensions are alleviated, and their willingness to participate increases. This, in turn, enhances the quality and reliability of the research outcomes.

This doesn’t happen in a single training session or going through a module, but develops over time as you build relationships with your patient partners, the same can be said for the patient partners involved in health research. However, you have the opportunity to learn from those who  have been doing this longer and have more resources because of their participation and inclusion of patients in their studies. For me, it is important to be involved in the building of these resources because it is how I best learn.

With over 100 published articles across platforms like Healthline and CreakyJoints, plus many global media features, I’m not just boasting about my achievements but highlighting how clinical trial training extends beyond the individual patient and reverberates through the community.

While not every patient participant may be as active as me, there have been times I have recruited patient participants more effectively than traditional recruitment methods. Something that I know is one of the most difficult parts of clinical trials.

People often ask how I acquired my extensive knowledge about arthritis. My expertise comes from lived experience and active participation in research. I have the privilege of engaging with top experts in my disease field, far beyond the brief consultations with my overburdened healthcare team.

When patients and their families are well-informed, they become advocates and ambassadors within their communities. Being involved in research has taught me so much about arthritis, enabling me to be the patient advocate and content creator I am today. 

 As a patient influencer and leader, I share knowledge, dispel myths, and encourage others to participate in trials. This collective awareness boosts trial enrollment and promotes an understanding of medical literacy and influences proactive health management. It’s a ripple effect that leads to improved health outcomes on a larger scale. 

I can’t fully summarize the true importance of clinical trial training in a ten minute speech but I do hope that what I have shared with you today has given you a glimpse into that importance along with some advice on how to effectively engage your patient partners.