Choosing the right word matters.
Being thoughtful of the words we use is important. Choosing the perfect word can not only provide contextual clarity but also reflect your respect for your audience. Clinical trials offer many examples of this – one of which is the distinction between “caregiver” and “care partner.” Here’s how Praxis distinguishes between them, and how we address caregivers and care partners in our recruitment and retention recommendations.
A caregiver-patient relationship implies that the patient relies on a caregiver to provide support that they cannot provide on their own. Some trials, including pediatric studies, require a caregiver as part of the informed consent process. Consent, therefore, may be given by the caregiver with assent given by the patient.
A care partner, on the other hand, may be someone who provides support for a patient through their medical journey; however, the patient can still manage their condition independently. Care partners may be friends, family, or others within the circle of people who influence a patient as they make medical decisions, including whether to participate in a clinical trial. A care partner is not required for the informed consent process.
Supporting both caregivers and care partners.
We at Praxis recognize the difference between these two similar yet distinct roles, and we take this into account when developing our recommendations for patient-centric recruitment and retention campaigns. This often starts with considering how and to what extent we should address caregivers in the study’s creative concept.
For example, the messaging in the Lavender Study for pediatric epilepsy was aimed at caregivers directly. And a study for bipolar disorder included language for both patients and caregivers.
We also consider if it makes sense to include caregiver-specific tools, such as a recruitment brochure, informed consent support material, a visit guide, study visit reminders, or newsletters. Whenever possible, Praxis looks for ways to show appreciation to those in a patient’s circle of care.
For caregivers and especially for care partners (who may not be physically present during recruitment), having information available online through a study-specific website adds validity and acts as a resource to educate about the study and clinical trials in general.
During our strategic planning process, we also explore the possibility of reaching patients through their caregivers by exploring opportunities for digital advertising or outreach using advocacy organizations. If found to be appropriate, this tactic may include targeting keywords related to caregivers, vetting opportunities within organizations that have support groups for caregivers specific to the indication.
Have other questions regarding the language of patient recruitment? If you’d like to discuss this or any other facet of our industry, get in touch.