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Lessons from five million patient and caregiver posts

What can be learned from posts written on online forums by patients - many with chronic disease - and their caregivers?  The online health community of Inspire recently had its five millionth post, and founder and CEO Brian Loew offers a few lessons via Health Care Communication News today:

Patients want doctors to treat them as partners. Patients expect their doctors to listen to them not only about their symptoms, but also about their own perspectives on their condition. To be clear, patients don’t want to play doctor, but many patients—especially those with rare diseases—become highly educated about their condition and have done research which they believe bears consideration. The asymmetry of medical information available to patients versus doctors is almost gone, and today any one of us can go online to learn a great deal about a medical condition.

Patients are less cynical about pharma companies than you’d think. Patients want the medical system to work for them. They want pharma companies to make the drugs that help them and their loved ones. When we started Inspire, we were warned that patients would be overwhelmingly negative about pharma companies. This is simply not what we see. What we do see is a lot of discussion about how to optimize treatment, and a genuine interest among patients to best to benefit from their treatments.

Patients are not online just to vent. In our experience, patients seek three kinds of support: emotional, scientific, and practical. Many patients get scientific support from their physicians and online encyclopedic sources. But they are also hungry for practical information to improve their health, and they gather a lot of this information from their peers online. In two recent Inspire surveys—one of psoriasis patients, and another patients with the rare disease neurofibromatosis—each group said the primary reason they participated in online groups was to research the best available treatments. Emotional support and empathy are important, no doubt. But many patients share crucial practical information that only fellow patients know.

Previously: Experts by experience: A year’s worth of patient stories, Doctors: Please have “ears that hear” and Zebras with different stripes: One patient’s story

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