Clinical Research Considerations For Rare Disease Patients: Part 2 — The Impact Of Physician And Site Support

By Caitlin Horbacewicz, inSeption Group

Patient centricity is instrumental to successful clinical trials, but it is not always adequately practiced. Its importance is amplified in the rare disease realm, where willing trial participants can be scarce and often feel they are not well supported. Physician and site education, plus ongoing support, are critical to better serving such patients, but these trial elements are less commonly prioritized and/or appropriately addressed by sponsors than more “direct” patient-centricity efforts.
We as an industry must examine whether — and how — we are empowering and supporting physicians and clinical trial sites, who work under constant pressure related to timelines, data quality, and patient care. It is vital that biopharmaceutical companies monitor and seek to alleviate those burdens.
Often, investigating physicians are stymied by a lack of trial support, not a lack of willingness to serve their patients’ best interests: their time is monopolized by daily responsibilities relevant to their patients and their businesses. They must see a certain number of patients every day, spending a limited amount of time with each, and may be undermined by health insurance coverage limitations. In short, physicians are not empowered to dedicate appropriate time and effort to fully understand each patient.
Biopharma organizations can inspire and motivate investigators and sites by showing them in both word and deed that their contributions are valued, resulting in a trickle-down effect: well-supported physicians and sites are better equipped to provide optimal patient care and to execute trials with greater efficiency, accuracy, and enthusiasm.