For years, patients have shouted to be heard. But as online patient communities, chat rooms and forums have gained popularity—and political clout—their voices are resonating.

Now being used to paint real-world pictures of patient drug use, data from online patient communities can no longer be ignored or dismissed. “The history of medicine is that in many respects patients have been left out of the conversation,” says Brian Loew, president of inspire.com. “I think patient communities are a real opportunity to fix that.”

Already, data from online patient communities are being used to deepen understanding of the patient journey through illness, thus improving compliance, informing patient-centred endpoints for clinical trials and influencing reimbursement decisions. Such pools of patients are also being deployed to conduct direct-to-patient clinical research, where patients are recruited and monitored online, thus eliminating the need for clinical sites and investigators. In the face of payer skepticism, however, the question is how fast will it scale up?

Report Overview

In Observing Patients Online: the changing face of research, FirstWord investigates the role online patient communities can play in observational research to enhance knowledge of how drugs are taken in the real world. Based on expert interviews, research and studies, the report examines how the means to recruit patients online and track their experience via patient-reported outcome questionnaires and sensors in real-time has the potential to transform how observational studies are conducted.

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Key features
• Who takes the lead in commissioning observational research
• Typical studies being commissioned online
• How healthcare tracking is going mainstream
• Case study of UCB’s partnership with PatientsLikeMe
• Benefits of crowdsourcing: is it the new serendipity?
• The drivers of online observational research

Key Benefits
• Overview of how online patient communities are transforming observational research
• Access to expert opinion from key leaders in the industry
• Discussion of conventional versus direct-to-patient trials

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