Patients as Partners in Research: “That’s Just the Disease”
Twenty-five years ago, when I was diagnosed with Spinal Muscular Atrophy (SMA), I began to hear a phrase that would shape my life and, in some ways, my rebellion against the limits of medical thinking:
"That's just the disease."
It was a tidy explanation, often offered to close difficult conversations. But for me, those words opened a lifelong inquiry. I wanted to know why my body responded differently, how fatigue was produced, what role genes, muscles, and medicine played in the choreography of adaptation and decline. I could not accept "that's just the disease" because my body was never just anything. It was complex, intelligent and always teaching me something new.
That instinct, to ask, to probe, to learn, is what transformed me from a passive recipient of care into an active interpreter of it. I became fluent in the language of science not because I sought to become a doctor, but because I wanted to become a better patient. I wanted to understand enough to participate meaningfully in my own care, and eventually, in the systems that shape others' care too.
From Patient to Partner
Over the years, this hunger for understanding turned into a vocation. I now serve on international review committees, contribute to policy on disability inclusion, and speak at medical congresses. My work sits at the intersection of lived experience and medical knowledge: I build bridges between patients, clinicians and researchers who are willing to listen and learn from each other.
But I did not get here because I was "exceptional." I got here because I refused to be satisfied with medical certainty that excluded me. When I speak of patients as partners, I am really talking about patients as producers of knowledge, not data points or anecdotes, but collaborators who bring a different kind of expertise to the table. The expertise of living.
A partnership mindset shifts the power dynamic. It asks: how can research design, methodology and interpretation evolve when patients are not the objects of study but the architects of insight? How might our Patient-Generated Health Data, including detailed narratives and longitudinal symptom mapping, be theorized alongside traditional genomic and proteomic science?
Meaningful Involvement vs. Tokenism
True partnership is not an invitation to a meeting or a name on a steering committee. It is an ongoing relationship built on mutual respect and curiosity. I have often been asked to "represent patients", only to find that the agenda was already decided, the questions already framed, the decisions already made. This is tokenism: the performance of inclusion without the practice of listening.
Meaningful involvement, by contrast, requires humility from both patients and professionals. It requires researchers to ask, "What don't we know about how this feels, functions or fails in real life?" and for patients to ask, "What can I learn about the scientific process that governs the treatment of my condition?"
When both sides are willing to learn, something extraordinary happens: medicine becomes human again.
The 'Exceptional Patient' as a Data Bias
My visibility, my ability to "speak at international congresses," has a complex cost. It reframes me and patients like me as exceptions whose high function or educational access grants them a singular voice. In the eyes of many clinicians and researchers, I stop being a representative of a complex patient population and become an outlier, a fascinating edge case that doesn't challenge the core assumptions about the average patient experience.
This exceptionalism is not an accolade; it's a systemic barrier. The medical establishment often defaults to hearing from the small pool of articulate, highly functional patients because their narrative is structurally less disruptive and therefore easier to integrate into a professional setting. But by elevating the "peer-like" patient, we inadvertently create a selection bias in patient-reported data, silencing the crucial insights of those who lack the confidence, capacity, or privilege to "challenge doctors".
Where is the space for the patients who quietly perform their N-of-1 trials in living but pass their insights to me, saying "people listen to you"? If we truly want to evolve research, we must design inclusive data collection mechanisms that capture the expertise of the patient who speaks through a caregiver, who communicates via technology or who is simply medically marginalized. Patient partnership cannot be predicated on the ability to perform medical confidence; it must value all forms of lived data.
Participating as a lecturer on the UCT Neuroscience Institute's Master of Neuroscience (MNeuroSc) programme
Earlier this year, I had the privilege of contributing to the Neurogenomics Elective which was offered as part of the Neuroscience Institute's flagship Master of Neuroscience (MNeuroSc) programme. It was one of the most affirming experiences of my advocacy career. Standing before a room of future scientists and clinicians, I spoke about SMA, not as a tragedy, but as a lifelong education in adaptation, curiosity and systems thinking.
We discussed how patients often decode medicine not through textbooks, but through algorithmic interpretation and pattern recognition: how pain shifts, how energy ebbs, how medication alters mood or movement. Or simply how social conditioning in highly successful families is the answer to "How does she do it?". I told them that patients are constantly performing heuristic data collection, small-scale trials in living, and that if researchers learn to see those experiments, they can find real-world evidence hiding in plain sight.
That session reminded me that education is reciprocal. Not only did I share my insights, but the students also taught me- about the excitement of discovery, the humility of not yet knowing and the desire to make science matter beyond the lab. It confirmed what I've always believed: patients are not the end-users of research, we are the co-authors of its meaning.
An Invitation to Relearn Medicine
Today, as someone whose influence as a patient has grown, sometimes to the point of being recognized globally, I find myself extending a different kind of invitation. Whenever possible, I invite my clinicians to attend conferences with me. I want them to see how patients theorize, question and advance the field. Many still view me as "an exception," but I tell them that exceptionalism is a symptom of exclusion. There are countless patients capable of the same insight, if only the system made space for their voices.
Some of the most rewarding collaborations I've had recently have been with medical professionals who approached me to help integrate patient insight into complex subjects like pharmacogenomics. In these moments, the distance between clinician and patient collapses. We become co-designers of knowledge.
To Researchers, A Simple Request
If I could offer one piece of advice to researchers, it would be this:
Start by assuming that patients are intelligent. Not "intelligent for patients"- just intelligent.
We may not have your formal training, but we have a kind of data that cannot be captured in charts: the lived texture of uncertainty, resilience and adaptation. If you make room for that kind of knowledge in your work, you will not only humanize your research, you will deepen it.
Partnership is not a courtesy; it is an innovation strategy for correcting data bias and achieving truly patient-centric precision medicine. The next frontier of medicine will not be found only in laboratories or algorithms, but in the algorithmic integration of lived experience.
For me, the refusal to accept "that's just the disease" was not about defiance. It was about belief that the body, even in its fragility, contains intelligence worth studying. Twenty-five years later, I am still learning to listen to that intelligence, and I invite the scientific community to do the same.
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