Yes, No, Maybe?
As patients with a chronic illness, we all might be invited at some time to join a clinical trial. Such an invitation can raise many questions, and requires some serious deliberation on our parts before making a commitment. Knowledge of the basic workings of clinical trials is a must to start with, but since trials come in a wide variety of styles, getting to know the particulars of a specific trial is crucial. There are lots of good reasons for joining a trial, and we must examine our own motive for doing so, and be realistic about our ability to carry through our commitment and obligations over time.
I recently finished participating in the Lupus Outcome Study sponsored by the University of California at San Francisco Rheumatology Department. It was designed to measure the impact of having lupus over a 20 year period on a patient’s physical, mental and social well-being. The trial consisted of a 45 minute telephone interview once yearly, answering many questions about symptoms, treatment, social interactions and mental health. I looked forward to my yearly interview (on the couch), reporting my current state of health. It was rewarding to know that my responses were part of a consortium of other patients’ responses about how lupus had affected them over a long time period. I felt proud of the principal investigator for taking on such a lengthy, monumental task, with concerns of lifestyle impact, not just medical management of lupus. I would imagine the results could be extrapolated to many other similar chronic illnesses as well. It felt good to provide information that may help others in the future.
With the focus on evidence-based medical management, research is the cornerstone for future treatment protocols of lupus and most other illnesses. Research must be disciplined, is demanding, and is very time consuming and expensive to conduct. The participants are critical team members, part of the scientific community trying to prove a hypothesis, answer a question, solve a serious problem. We must enter any commitment we make to a clinical trial with the utmost respect, good intentions, and follow the protocols judiciously. We cannot “fizzle out” and jeopardize the data. It is essential to know all that is expected before entering a trial, both the risks and benefits, costs, travel requirements, length of time involved, how results will be handled and published, etc. I would encourage anyone to participate in a clinical trial that might benefit you or others in a similar situation. Only you can decide if the terms of the trial are compatible with your lifestyle, time constraints and constitution.