Gary Barg, Editor-in-Chief
In 1992, three years before the first issue of Today's Caregiver magazine rolled off the presses, I accompanied my mother to a physician’s office where they were conducting a clinical trial of high cholesterol. Her doctor suggested she consider enrolling in the trial and she asked me to join her during her first visit to the clinical trial site.
Having never worked in healthcare, my only impressions of clinical trials to that point were what I had gleaned from television programs or the news, which frankly did not fill me with hope. Yet, when we arrived, we were ushered into the doctor’s office who spent time explaining the trial and answering our questions. After the meeting with the doctor, she decided to participate in the study, and I remember that the care mom received while in the trial was thorough and exceptional.
Since then, I’ve met many tremendously caring advocates within the clinical trial industry and have worked hard to help my fellow caregivers have a better understanding of what they need to consider when thinking about a loved one’s enrollment in a study. Helping caregivers understand the value of participation is especially important when their loved ones cannot make such decisions without their help and in many cases need a caregiver’s assistance to meet inclusion criteria. Respecting the importance of the family’s role in clinical trial participation is a two-way street. As much as we would like family members to be well-educated when making the decision to enroll their loved one in a trial, it is important for the clinical team to also understand the needs and motivations of the family members.
At a Fearless Caregiver Conference a few years ago, a clinical trial site physician joined us on our expert Q & A education panel. To her credit, she took the microphone and stepped into the middle of the room crowded with family caregivers, inviting them to ask her anything about the clinical trial process. To her surprise, every single question was about placebos. She answered each question warmly and in detail, making sure to overcome their fears and concerns. After the event, she told me that she was grateful to the attendees, as she had no idea that the use of placebos was this misunderstood and she would take better care in educating patients and family caregivers in her practice.
This is a great example of learning from the real experts in care- the Family Caregivers. And why we are pleased to announce that the newest addition to the list of Fearless Caregiver Guides is Demystifying Clinical Trials. Something every caregiver and caring organization and even clinical trial organization needs on their bookshelves.
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