The Long-Term Burden of Oversimplified Data and Diagnoses - A Patient-Researcher Perspective

It was October 2019, and there I was, massaging my ever-aching knees as a patient who couldn’t get any answers from the room full of orthopedic surgeons surrounding me. That was who the conference was geared towards, after all. The first presenter, a surgeon from Germany, started the section on lower-limb realignment surgeries. Five minutes in, he informed us his findings had revealed that he had performed surgery on the wrong bone in 20% of his patients. I was shocked the surgeon had publicly admitted his error, and I felt a growing intrigue as I continued listening, waiting for him to touch on the second piece of the puzzle that he hadn’t yet mentioned. The Q&A started, and I sat glued to my seat, hoping someone else would bring it up. As the typical question set rolled in – had anyone heard the part where 20% of patients literally had been surgically altered erroneously? – I realized this was an opportunity. I gave myself a pep talk, and soon found myself standing at the mic. Scared sh*tless. 

 Before I continue, let me start with a disclaimer – I am not a clinician. I am a graduate student and a dedicated researcher, but when I drive to physical therapy every morning, or hang my handicap pass on my rearview mirror, I’m reminded how closely I align with patients who have suffered the unfortunate events of injury, pain, and loss of the game they love. Along with clubbed feet and a bilateral 17-degree valgus deformity, I was born with that all-consuming type of love for “the game.” I have been the patient of world-renowned orthopedic surgeons and physical therapists in my pursuit to play soccer despite my congenital abnormalities. The only problem was that I was not structurally equipped to play at the levels I wanted to. It took 23 years and 10 surgeries to finally admit that. It wasn’t until after getting both legs reconstructed with double osteotomies in a final attempt to play in my 5th season of college soccer, that the time came to hang my cleats up and to find a new way of searching for answers far from a soccer field. Shortly after is when I found myself in the world of academia. 

At the time, I had started my Master’s in Biomedical Engineering. I was seeing dozens of doctors, reading my own medical history, x-rays, MRI’s, and operative reports. Even my Master’s project was a gait analysis on myself. And after about a year and a half, I had a pretty good understanding that my surgeon, just like the surgeon presenting at the conference, had done something wrong. Only in this instance, it wasn’t just the wrong bone. I had also realized my procedures were based on a single AP weight bearing x-ray. In other words, the procedures that corrected my 17-degree deformity, only corrected it in a single plane and disregarded rotational deformities and the adjacent joints. 

I tapped on the mic. “I’m here as a patient as I’ve received similar realignment surgeries.” Every head in the room turned. “I know you mentioned you use clinical assessments in the office to evaluate hip mobility, but is that really enough to rule out the presence of rotational deformities?” I saw a female surgeon in the audience nod her head in agreement that no, it was not enough. I took a quick sigh of relief as I watched the presenting surgeon inhale. He first apologized that I was a patient who received these surgeries, and then he said that I was right and that it likely wasn’t enough. We continued the conversation after the presentation. He looked at my x-rays and noted beyond the surgical errors, the x-rays used to guide my surgeries weren’t even collected correctly. Eventually, he referred me to the ‘godfather of rotational deformities’ who just so happened to be located less than an hour away from where I live. So, maybe I shouldn’t have been sitting in that presentation as a patient that day (as I don’t think a surgeon would ever admit an error so directly in an office setting), but this was the first time a doctor had ever acknowledged my suspicions and I knew I needed to keep asking questions. 

Today, I am in my 3rd year of research as I work towards earning my PhD. I chose research over medical school so I could find the answers my doctors didn’t yet have. This track has been challenging, but not for the reasons I thought it would be. It’s not the work or the volume. The most challenging part for me has been navigating being a patient in academia and finding my voice when I’m not comfortable with the level of accuracy or the claims that are being made. In light of my patient experience, and admissions of healthcare practitioners like those at the conference, I constantly question how we are approaching and conducting research. I wonder about data quality control checks. I read about the latest and greatest intervention that improves one measure and all I can think of is, at what cost? My surgeon corrected my 17-degree deformity, but 6 years later, I now present with ~25 degrees of structural, rotational asymmetries quantified with a 3D rotational CT scan. From all angles that I can see, the patients are the cost. I, am the cost. And my patient experience is just one small example of a larger problem – one that we see across orthopedic surgery, clinical care, and musculoskeletal research – where pain or a symptom is treated without considering that it may not be the root of the issue and may have detrimental consequences down the road. 

So, I started asking new questions. I question my peers, my mentors, and most importantly, myself. I encourage others to question me too. What is the role of research? How valid is our methodology? Are we overstating claims? We need to recognize the extent of our limitations and work to expand them. We should be multidisciplinary in our approaches and utilize different perspectives and expertise. In our labs, regardless of our role, we should be cultivating an environment that welcomes and encourages questions and healthy debate. One with an open dialogue that is supportive, but also holds each other accountable.

Are we giving ourselves enough time to ask all the right questions and not just the one right in front of us? Our work and our job shouldn’t be a race to the finish line. We should be asking ourselves, and each other, these difficult questions. We can build this dynamic.

 In an ideal world, my surgeon would have performed more comprehensive preoperative assessments to consider the source of my malalignment. Maybe what my surgeon did really was the best evidence-based practice at the time; however, I would not know what I know now if I had relied on my surgeon for answers. About a year after I got my second leg reconstructed, my pain and symptoms grew significantly, so I went back to see him. He insisted that my legs looked great, that there was no explanation for my symptoms, and that there was nothing he could do. It became routine for my surgeon and many other practitioners to dismiss my concerns, my questions – to dismiss me. I’ve had to learn to feel comfortable and confident to say no to surgeries and exercises that I don’t agree with. This is more difficult and uncomfortable than clinicians may realize. To this day, I see doctors who take approaches similar to my surgeon and suggest repairing my torn labrum or performing a proximal femur osteotomy with incomplete assessments, and total  disregard for previous procedures. When I asked the surgeon who wanted to perform a proximal femur osteotomy how it would affect my distal femur as it was already realigned, he said that I would be slightly bow legged on that limb as these procedures can change alignment in other planes up to 4 degrees. I can’t say I was shocked by the answer, but I was shocked that he would perform the surgery knowing that I would become bow-legged – like it was normal? Those surgeons would have gladly performed surgery on me, and it scares me knowing how many patients don’t know the right questions to ask or worse, to just ask questions. For now, I continue to search for answers and ways to manage the pain and the consequences of my surgeries on my own. But as a patient, I can’t help but wonder how much stronger allies researchers and surgeons could be. One day. 

Now, I recognize that as researchers we can’t control everything. We do have to fight for funding dollars and citations to prove to a university that we are enough, that we are capable, and that our work will have an impact in our field. I know there are constraints that I, as a student, am not even aware of. At the same time, the inconsistencies in how research is not only conducted, but also applied, is evidence the system is flawed. It lacks adequate rigor and protections for when people forget there are patients on the other side. Our research - how it is applied, communicated, and conducted - is sacred. And that is what I want to bring awareness to. 

While I have a lot (A LOT) to learn, my patient experience continues to inform and guide my experimental approach. Most of my work thus far has focused on improving and expanding orthopedic methodology. I have also sought to substantiate claims that guide much of our therapeutic practice, but lack true evidenced-based data. Part of my efforts have included some basic science work that studied the natural evolution of post-traumatic osteoarthritis after rodent ACL injury and its relation to knee biomechanics. The data revealed that walking with reduced knee flexion after ACL injury is directly associated with bone volume loss, suggesting that improving the way people walk after injury may be a good treatment strategy to maintain joint health. Another project looked to expand our understanding of muscle behavior during walking by assessing changes in muscle fascicle and tendon dynamics. We are developing a more flexible ultrasound application to track fascicle and tendon dynamics that will allow us to collect more information and with improved levels of accuracy than currently available open-sourced programs. Continuing this research stream, future works look to combine cartilage and muscle imaging technologies to deepen our understanding of maladaptive tissue characteristics after injury. Our lab strongly believes that we need more rigorous methods to gain an understanding of disease and disease progression and to develop appropriate interventional strategies aimed for the best interest of our patients. I am wholeheartedly committed to this approach and believe it is necessary to best guide our research, and translation of our research to clinical practice. 

I don’t know if research would have stopped my doctor from using a single plane x-ray as the lone proof for my procedures. And I’m not suggesting we have the time or the ability to investigate every possible outcome of an operation. We can, however, encourage questioning. We can pave the way for alternate views, fund new approaches, alter the funding model to support quality over quantity, and standardize research to improve translation to evidence-based practices. Like the surgeon at the conference, we can own up to our mistakes in light of new information, and maybe, just maybe we can start taking steps towards creating a system that focuses more on the comprehensiveness of our research findings, rather than their rapidity or volume. 

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