Dr Kanter and Ms Schrandt, I appreciate your Letter to the Editor titled “Is it time to formally thank patients for their contributions to medical research?” I find your premise to be very patient-centered and humanistic. Every physician owes a great deal to their patients, who are, I would argue, our best teachers. We learn something about our own skills in developing a meaningful and effective patient–physician relationship with each encounter, as well as the importance of individualizing a patient’s care to those components that matter the most.
We strive to treat the patient, not the disease. Not only are our patients the foundation of medical education and life-long learning, they also contribute to the greater good in medicine in many ways, including medical research.
There would be no knowledge gained in clinical research without the human volunteer. For clinicians, these volunteers may be our own patients who are volunteering for a colleague’s trial, or they may be a colleague’s patients who are participating in our own clinical trials. Even in the face of personal risk, volunteers in human research elect to contribute to the gain of knowledge, which may not come to clinical fruition for years. No matter the reason for their participation, volunteers do, in fact, offer themselves to the “good of society” in clinical trials, even without knowing whether there might be, or might not be, a positive outcome for themselves. Do we as physicians and researchers appreciate that human volunteers willingly enter a potentially dangerous, or even life-threatening, clinical trial with no guarantees of the outcome?
As I ponder our obligation to the brave volunteers who participate in the clinical trials we devise and oversee, I wonder, as you have, if we pay these special individuals the respect we in the medical profession clearly owe them? If not, how can we better signal that obligation and appreciation to them? I fully support your recommendation that journals appreciate the importance of recognizing the volunteer in human research trials, and how better to do that than as an acknowledgment of their role as part of the research manuscript itself. For our part, The Permanente Journal will begin encouraging authors of human volunteer research trial manuscripts to acknowledge the contribution of the volunteers to the trial, not by specific name but by their collective participation. This applies to retrospective research made possible by access to data stored in patients’ electronic health records as well. Likewise, case reports and clinical case series should include a similar recognition of appreciation for patient contributions to medical education and knowledge acquisition. This recognition is the right and just thing to do.