Online 'Listening' Is Improving Clinical Trial Design
As companies strive to make their clinical trials more patient-centric, monitoring social media discussions is becoming an important tool to learn what matters to patients, their families and caregivers.
An article in Applied Clinical Trials says that by listening to what's being said in online forums trial designers and managers can gain insights they can incorporate to make their program more accommodating to their concerns. "Patient stories capture what it is like to live with a disease and may inspire new approaches and ideas," says the article, which also discusses other actions to make clinical trials more patient sensitive.
Two examples are presented of how this active listening impacted the recruiting programs for a Crohn's disease trial and an Alzheimer's study.
Reading through multiple blogs by family members of Crohn's sufferers, researchers learned how frightening the disease is to the family and how deeply involved families are in treatment decisions. Notes the article: "Therefore, to help optimize recruitment, the company tailored its educational materials to better ensure a joint decision-making process around trial participation."
In the Alzheimer Disease study, "An analysis of web postings revealed that far more online chatter about AD came from caregivers than from patients. Therefore, an important component of the recruitment and retention strategy was to engage and educate caregivers by explaining the objectives of the study to them and treating them as partners."
The analysis also showed the study designers that caregivers and patient families relied heavily on information and support from patient advocacy groups. This prompted the company to forge closer ties with these groups in order to enhance their recruitment outreach.
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