Regardless of the words you use, clinical trials are often perceived with a negative connotation by the general public, a travesty that the medical research community has been tirelessly striving to address. Significant progress has been made in the field within the past century; institutions and laws to enforce the ethical and safe conduct of all forms of human research (including the Nuremberg Code and the Declaration of Helsinki) have grown by leaps and bounds within the past century, along with strict implementation of appropriate training and education for all research professionals. Incredible medical and surgical marvels have been made possible: from the awe-inspiring, such as organ transplantation, to the easily taken-for-granted ease with which we can self-medicate with Advil and Tylenol for the common headache. And when patients who have completed clinical trials are asked about their experience, 91% of them state that they had a good experience and would recommend trials to their friends and families (Source – Patients Attitudes and Preferences About Participation in Clinical Trials and Patient Recruitment Strategies)
So with all this progress, why hasn’t the public image of clinical research improved proportionately? Why are so many prospective patients and their families still weary of participation in a clinical trial?
The most obvious of many reasons is fear. Fear of the unknown [risks], fear of invasion of privacy, fear of being taken advantage of…these barely brush the surface of the numerous anxieties that patients have, many of which I’ve heard over and over in my time as a research coordinator.
Widespread education and awareness of all aspects of clinical research is key to overcome this, and it should be reinforced within a trusted medical setting, whether it be the outpatient clinic of a general care physician, or the office of a specialized group within a hospital. To effectively reach patients, the change has to occur across fields in our medical institutions; our up-and-coming as well as seasoned physicians, surgeons, hospital directors and administration, should encourage their patients and colleagues alike to ask questions about current research in their respective fields. A patient will certainly feel more comfortable to inquire about clinical trials and even be more receptive to being approached about one, if they know that their medical team is informed and well-versed in the ongoing research at their center and within their specialty.
I worked for 3 years within oncology clinical research where the physicians were very enthusiastic and supportive of clinical trials, and the patients were equally cognizant of them. One of the main reasons for this high awareness is that oncology is a “popular” field that is buzzing with research for new therapeutics; for as many chemotherapeutic, surgical, and radiation combinations that we present to patients, there is no set cure. Other fields are less well known and it can be confusing to understand the role clinical research plays within them. For example, there are usually standard-of-care regimens that have been established, and it is difficult for patients to gain perspective on why they would participate in a treatment trial evaluating a drug to treat an illness for which there is already an FDA-approved drug for.
What we have to emphasize is that the current therapies that are standard for us today, all had a long road to gaining FDA approval, none of which would be possible without the participation of patients, physicians, and research staff alike. Now working in Lung Transplant, I see patients struggle with that decision daily: we have standard immunosuppressive agents that have been approved for their indication, yet they all have varying levels of efficacy and side effects. What if we could evaluate a drug that was more effective with a reduced toxicity profile? What if that drug eventually became the new standard because it was superior? I think we have been fortunate in that modern medicine has given us the ability to have so many treatments, preventative measures, and diagnostic techniques that we have today; however we cannot afford to become comfortable where we are at when there is so much room for improvement and discovery.
In order for medicine to reach its full potential, we have to make sure the public, patients and health care professionals alike, are more educated and aware of ongoing medical research and the role it plays in improving the future of health care. We can start by continuing to encourage an open dialogue on clinical trials within our hospitals and clinics, and making patients aware (read about these Cure Heroes of Clinical Research ) of the resources out there that they can reach out to for more information.
- What Are Clinical Trials (Medical Research Studies)? A Quick Primer
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- Why participate in a Clinical Trial (Medical Research Study)?
- What Are Rating Scales And How Are They Useful in Clinical Trials?