Partnering with Patients and Caregivers in Clinical Research
September 26, 2022 | Decentralized trials, Digital technologies, Patient-centricity, Virtual collaboration, caregiver, virtual trials
One definition of patient-centricity is “Putting the patient first in an open and sustained engagement of the patient to respectfully and compassionately achieve the best experience and outcome for that person and their family” (Yeoman et al. 2017). That is, patients should be involved in all decisions related to their health, including in clinical trials. To achieve true patient-centricity, the authors highlighted the need to understand the patients’ needs and experiences, listen and respond to patients’ feedback with respect and humility, partner with patients to innovate and measure impact and outcomes that are important to them, and provide easy-to-understand and convenient information.
At the clinical trial level, directly engaging patients and caregivers in protocol development, study design, recruitment, manuscript or plain language summary writing, and data dissemination is key to conducting a truly patient-centric study. In theory, this approach is promising for improving clinical decision-making and, ultimately, patient outcomes. However, as Sheridan et al. (2017) reported, many researchers, patients, and other stakeholders lack clarity about when and how to engage as partners within the clinical research process.
In addition, Hemphill et al. (2020) reported that, while engaging patients and other stakeholders in research partnerships shows promise for strengthening clinical trial evidence, this requires substantial resources and effort. There are several potential challenges associated with building relationships and communicating with patient and caregiver partners, including ensuring that they feel heard and valued, as well as managing expectations about the project progress or their roles.
In this article, we dive into the role of digital technologies and virtual tools for partnering with patients and caregivers during all stages of the clinical trial journey.
This content was provided by Impetus Digital
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