Read a very insightful article (citation below) very compelling. The authors have medicine in their training and/or experience of being affected by illness. Their various views give an insight into the human aspect of research and patient advocacy.
Here is a quote from a gentleman who has committed himself to patient advocacy after enduring leukaemia,
“Patients need faster and more innovative research and can contribute significantly to clinical trials that are designed to truly meet their unmet needs and priorities, if they are involved as partners in the research process at an early stage. However, patient involvement in clinical trials regularly takes place too late in the research process, if at all. Hence, clinical trials are often solely focused on solving clinically relevant challenges and meeting endpoints. They should focus on addressing the priorities, preferences and needs of those whose lives are on the line, or have a compromised quality of life through symptom or therapy burden”.
We often refer to the patients enrolled in the IMU trials and feel compassion for their endurance and suffering. We then discuss the performance of the company which of course is natural. We often segue too quickly, or fail to acknowledge the importance of the patient and their families. It is however very important as shareholders to better understand the branch of medicine developing to protect the rights of patients and carers. So often there seems to be little time to assess options when confronted by the immediacy of treatment in the face of intimidating illness and the norms of treatment versus the promise of novel treatment.
Each contributor to the article brings a different perspective and role in the process and is an important read for all of us. For many we will bring our own unique perspective on the process which is fundamentally based upon the human experience.
“Patient involvement in clinical trials”Jan Geißler, Emily Isham, …Cheryl Lubbert Communications Medicine volume 2, Article number: 94 25 July 2022)
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