The Power of a Question
Disclaimer – The story I’m about to share happened while I was a guest at the Rheumatology Research Foundation’s (the Foundation) Investigator Meeting in Denver. On the surface, this post might seem like a humblebrag or an act of unnecessary arrogance. Nothing could be further from the truth. If it does come across that way, it's because I lack the necessary writing skills to avoid that impression, for which I apologize. The purpose of this post is to offer a template or foundation for patient advocates or foundations who find themselves in a similar situation. Ideally, this post will inspire a more articulate and insightful patient advocate to take what I did and find a better, more impactful path to improving healthcare. Here is my story…
What is an Investigator Meeting?
Traditionally, an Investigator Meeting is a time for everyone involved with a new clinical trial to meet face-to-face and get familiar with the study, including learning about the roles in the study. These meetings help align the study team, explain protocols and procedures, review safety data, and answer any questions. The primary purpose of investigator meetings is to ensure that all investigators thoroughly understand the trial protocol. This consistency and accuracy are crucial for conducting successful clinical trials. By standardizing procedures across multiple sites, investigator meetings play a vital role in maintaining the integrity of the trial data.
Instead of concentrating on a single new clinical trial, the Rheumatology Research Foundation’s annual Investigator Meeting is a chance for representatives from all their targeted research grants to meet and get familiar with all the studies under their umbrella. It allows researchers and doctors to learn about other projects and technologies, hoping to gain new insights into the cause, progression, and treatment of various forms of arthritis. If you're curious, there are around 120 different types of arthritis, with 80 falling under the autoimmune category.
For the first time, the Foundation decided to bring patients like me (plus five others) to their Investigator Meeting so we could add our patient perspectives to the conversation. We were invited as part of their #RheumChampion program, which the Foundation had reached out to me to be a part of. Under a paternalistic healthcare system, it was assumed that a doctor or researcher working towards a “cure” without any input from patients was the patient perspective. However, as patient- or human-centered care models become the new best practice, it has become obvious that the old ideas of paternalistic medicine do not produce the results we need. By bringing us #RheumChampions to the metaphorical table, the Foundation is adding our expertise to these research projects. As a patient, I bring life to a doctor or researcher’s textbook or research paper. Patients are experts too; this should have been accepted as fact yesterday, but that's another post for a different time!
My Experience
For me, the meeting began on Tuesday, which was travel day. Coming from Boise, one would think this would be easy, but I ended up missing my flight due to an embarrassing episode of brain fog. I left my wallet at home simply because I didn't put it back in its usual spot before going to bed Monday night. Regardless, I made it to Denver on Tuesday but with increased neck pain thanks to the turbulence flying into Denver’s airport. In addition to missing my flight, I somehow canceled my return flight on Friday. After waking up at 3:30 am in a panic about my return flight, I was able to book the last seat on the flight I had originally booked. Better lucky than good, my adventure was not off to the best of starts.
Wednesday’s agenda was about the idea of “patient perspective” and how to implement it into the Foundation’s research grants. First, we received a Foundation 101 briefing. Essentially, it was a behind-the-scenes look at the mission and purpose of the Foundation and how they want to incorporate the patient perspective into their work. Next came brainstorming. This was interesting because I got the feeling the Foundation was surprised and amazed at the practicality and seriousness of the ideas we patients presented. They were surprised not because they didn’t think we were capable as advocates but because of our willingness and strong desire to take over the process ourselves at a moment’s notice. Traditionally, patients have not been involved in meetings like this due to a lack of access and resources, not desire or skill.
The Foundation had arranged a dinner with their leadership and Impact Team, allowing us to get to know each other in a more informal setting before the work of adding the patient perspective began.
The Presentations
Thursday’s agenda included presentations from researchers, which is the main reason for this post. The morning's speakers presented under the umbrella of Immunology. About ten speakers had 6 to 8 minutes each to present their projects. These presentations were deeply scientific; I understood a little but spent most of my time asking Dr. Google and the National Institute of Health’s (NIH) website for translation help. What I did understand was that there were more photos and discussions about the spleen and the little feet of the mice they were experimenting on than the utilization of the word patient. At a meeting about the diseases I suffer from, I probably shouldn’t feel more sympathy for the mice being experimented on than for myself, whose pain levels were steadily rising at that moment.
At the end of the presentations, there was a typical question-and-answer period. All the researchers and doctors had access to a website where they could submit questions anonymously; we #RheumChampions did not have the same access. To the moderator's credit, he invited questions from the audience. I started to consider asking a question regarding why none of the presenters had used the word patient even though they were supposedly working on treatments and cures for us.
The Question
After some quick contemplation, I was concerned my question could be interpreted as mean-spirited or dismissed as not pertaining to their projects. Thanks to my time working with Stanford University’s Medicine X Conference (MedX) in 2013-15, I knew that even a Q&A opportunity was an excellent time for patient advocacy. So, I started thinking about the value of having the presenters explain their research in the context of my quality of life. How would their research change my quality of life? As a patient advocate, I needed something tangible to take back to my community to justify our time, energy, and donations to these researchers.
As luck would have it, I was able to grab the moderator's attention for the last question before a break. To force all the presenters to answer, I didn't want to introduce myself and risk only getting a response from those who work on rheumatoid arthritis. Unfortunately, the moderator wanted me to introduce myself since I was a member of their #RheumChampion program, which flustered me a bit. After my introduction and question, the moderator called it a “profound question” before asking the panelists for an answer.
The Response
At first, I was flattered and proud that I had received this compliment. It’s an ego boost when a respected MD in rheumatology calls your question profound. However, my MedX experience quickly brought me back to reality. My question about framing research in the context of a patient’s quality of life might have been considered “profound” in 2013, but in 2024, I wanted a practical application answer. I wanted something I could hold onto, something I could give to my followers like a medication. Profound might get more likes and retweets on social media, but I wanted to know when I can go hiking or skiing without needing to bring my bottle of opioids or extra kinesio tape for my swollen knees. Welcome to the oddity of patient advocacy.
To the relief of the nine other panelists, one lady took the mic to try and answer my question since her work dealt with rheumatoid arthritis. I admired her willingness to try, but her response seemed more like a rewording of the summary she had provided during her presentation. As I discovered throughout the rest of the day, the advocacy “win” was the question itself and not any answer I could have received. My question caused a sudden reevaluation of their research and work through the eyes of a patient, I got the distinct impression that this was something they hadn’t been forced to do for a long time.
During lunch, researchers and doctors from various universities and institutions across the country approached me to say “thank you” for asking that question. They all followed with explanations of how I had made them seriously think about their work and how different the Investigator’s Meeting now felt; their words, not my assessment. One researcher from the University of Chicago opened with, “I’m a patient-centered researcher,” which I initially took as offense. However, she was very happy I had asked that question. She had quit working with mice because she felt the data couldn't truly represent the human experience of being a patient with a disease like rheumatoid arthritis. Even a member of the NIH administration team talked to me about the importance of my question but explained that the system prevented others from fully answering it.
Wrapping Up
Thursday ended with a two-hour “happy hour” in the main ballroom. By this time, I was losing my voice due to all the interactions and the pain in my neck was rapidly increasing. I tried to hide in plain sight during the happy hour, but it turns out I’m not good at this strategy. I couldn't get a drink of water without someone stopping me—okay, that was a humblebrag. Regardless of my attempt to brag, there were two interactions from the happy hour that I wanted to mention.
The first came from the two brand consultants the Foundation had been utilizing for the last couple of years, who created the #RheumChampion from what I understood. Both tracked me down to say they had never seen the mood of that meeting shift so quickly and that the tone of the meeting had “immediately changed” after I asked my question. Again, although I was curious to know how the researchers’ projects would affect my quality of life, the advocacy win was the principle of the question.
If we have never met, I’m a trained chronic introvert. All this attention and interaction were not easy for me. I don’t mind being the center of attention if I had decided beforehand to seek it. In this case, I hadn’t initially set out to be the center of attention; I was simply asking a question I assumed would be relatively easy for them to answer. This is why this last interaction is still on my mind and probably will be for a while.
A PhD researcher from Minnesota, who was obviously nervous to even approach me, said she was “intimidated” to speak to me because of my question. Wait, WHAT? Intimidated by me? Yes, I am usually twice the size of anyone in the room, but even small, newborn kittens are not intimidated by me because of my laid-back approach to life. She was concerned that since the researchers had such a hard time with my question, I would be so upset that I wouldn’t want to talk to her. I tried to explain that I wasn’t upset and that patients like me need her and her research colleagues for better treatment options and possible cures. Part of my job as an advocate was to make her life easier. I’m pretty sure she thought I had been PR trained and that was just a polite line instead of the truth.
Reflections
To be a great patient advocate, I can’t be intimidating regardless of my intention. Part of the job of being a patient advocate, especially a male in a disease group than mainly affects females, is being approachable and willing to be vulnerable. It is sharing my story with all who want to listen. For her to feel intimidated shows that questions are an underutilized advocacy tool but also indicative of a problem in research that needs more attention. Can medical research truly be considered innovative or revolutionary if we have lost the human component? Medicine should be about answering questions regarding the operation of life, not the research grant process or the “publish or perish” mantra.
Many of my fellow patients might not like this fact, but her story as a researcher is just as important as mine (meaning both me and all patients). All our stories, regardless of our roles in healthcare, are where data, innovation, ideation, and discovery lie, which is how we will ultimately get better treatment plans and cures. Our stories are also excellent tools to bridge the literacy gap between patients and researchers, which has become even more important with AI exploding onto the healthcare scene.
To the Rheumatology Research Foundation’s credit, they are both asking how to include the patient perspective in their work and actively listening to patients’ answers. To the researchers’ credit, when pressed by a patient like me, most are willing to ask how to better include the patient perspective in their research and actively listen to our answers. However, none of us need to overreact and place my story front and center just because I’m the one in pain. My pain won’t be helped, treated, or solved with more attention or publicity. The Rheumatology Research Foundation’s story still needs to be told, the researchers’ stories still need to be told, the doctors’ stories still need to be told. The difference is my story needs to be invited, accepted, and sought after just like everyone else’s before new ideation and truly patient-centered research and care can happen.
Suggestions
Since the purpose of my post is to provide a template for other patient advocates and research foundations looking to add the patient perspective to their work, I want to close by offering some suggestions I thought of while in Denver.
One of my fellow #RheumChampions, an accomplished actor and writer, was first diagnosed at 15 months old. I’m willing to bet my house her story would make for an amazing opening keynote speech. At Stanford Medicine X Conference, we had patients give what were called ignite talks. Imagine having one of us #RheumChampions give an 8–10-minute talk on what it means to be a patient with rheumatoid arthritis, lupus, or living in near-constant chronic pain before diving into the scientific weeds of the presenters’ projects. It’s a powerful tool that helps scientific research quickly become human-based scientific research.
I grew up with a one-star General dad who taught me fancy titles mean nothing, so I’m comfortable sitting with scientists with MDs and PhDs from the most elite universities in the world without much imposter syndrome or fear of speaking out. Put me on panels that other patients might not feel comfortable speaking on. A couple of #RheumChampions are experts at creating engaging social media videos and reels. Give them a video crew and editing bay so they can promote the stories of other researchers, the administration of the Rheumatology Research Foundation’s executive team, and other #RheumChampions under the Foundation’s social media handle as the meeting is taking place. Maybe even allow them to develop professional-quality videos for patients like me who don’t have the attention span for the cool, current social media formats so I can possibly expand my audience. Great content and positive exposure help us all. Implementing some or all these suggestions would be a great way of adding value to an already valuable meeting. This is an important point I want to emphasis. The Foundation’s Investigator Meeting already was valuable to patients like me. I’m not trying to fix something that’s necessarily broken, I’m proposing ideas to add value to an already valuable event.
Yes, patient stories need more attention and visibility since we have traditionally been shut out of meetings, conferences, webinars, and other methods of exposure common in healthcare. But this attention and visibility cannot come at the expense of learning about the Rheumatology Research Foundation’s #RheumChampion program. It can’t come at the expense of learning the story behind the Foundation’s $200 million-plus worth of targeted research grants. Like patients, there are researchers and foundations doing incredible work but not getting the attention they deserve. We need to know their stories too because that will ultimately help raise my quality of life! Bringing the patient perspective must mean finding a blend of stories so no one feels left out, alone, forgotten, or intimidated within this beast we call healthcare.
Check out rheum.org for resources provided by the Rheumatology Research Foundation