US cancer sufferers rely on online patient communities

A high level of engagement with online patient communities has been noted in a recent survey of almost 700 US-based cancer patients and caregivers.

Aptel Research and Patient Power conducted the Patient Power Summer 2014 Survey into use of, and experience with, online health information and its impact.

The key findings demonstrate the high level of online engagement of cancer patients and their frequent reliance on online patient communities as a primary source of credible and up-to-date health information.

This comes at a time when breakthrough therapies are being approved at increasing speed, more clinical trials are underway, and cancer patients in many conditions are living longer, and better.

The survey asked users of Patient Power to reveal their use of, and experience with, online health information, its overall impact on their lives, and its specific effect on patient-physician dialogue.

The results indicated that over 75 per cent of respondents, who looked daily or weekly for health websites, overwhelmingly ranked online patient communities and advocacy websites as their top choices when searching for the most credible and up-to-date information about their cancer. Pharmaceutical company and disease education websites were ranked last; cancer centre websites received a middle ranking and general health websites ranked lower.

• 86 per cent of respondents reported that online health information kept them updated on the newest information and treatments, while 84 per cent said it gave them a greater sense of control over their condition

• 90 per cent of respondents discussed the information learned via the web with their doctor

• 75 per cent of respondents agreed that health information via the web helped to create a greater partnership with treating doctors.

Commenting on these findings, Andrew Schorr, founder of Patient Power and a two-time cancer survivor, said, “There is now a growing vanguard of patients who seek credible information online to put them more in control of their cancer care. It is now clear their active discussions with their doctor, based on their own learnings, often lead to better, state-of-the art care and, I am betting, benefiting the less active patients sitting in the waiting room, as well. It’s a patient-driven sea-change in cancer care.”

Michele Derai, CEO of Aptel Research added, “When patients speak to their doctors, they get a lot of information about their disease, but they don’t know how it is going to impact their lives and they aren’t sure they’ve heard the whole story. Internet health information, particularly online patient communities that offer a connection to expert doctors and expert patients, fill this gap through sharing of the latest news and empowering personal stories. A doctor can’t tell you what it is going to be like to live with a condition and they could be behind the times in treatment for your cancer. That’s why more and more patients seem to be seeking information online. Patients increasingly feel, in cancer, you can’t afford to be wrong.”


Andrew Schorr: Patient Opinion Leader interview

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