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Mar 14th, 2010
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Heather Harper, who works with companies bringing innovations and resources to the e-patient community, gives some perspective from the patient community and highlights the benefits already being seen from widespread access to health information and engagement.

There’s no denying it, the e-patient revolution has begun. And that movement sets an important context for today and tomorrow’s FDA hearings on social media usage by medical products manufacturers. As we digest the discussion and many interested people offer additional comments to the FDA, we must make sure we are informed by the robust patient-driven conversation that is already raging online.

Patients – and many medical professionals – are not waiting for a perfect world of fair and balanced information. They are wading into the messy swamp of information, resources, support groups and medical professionals’ opinions available online and using it to help inform treatment options as well as to verify information from their doctors. Our recent Health Engagement Barometer showed that a new second opinion has emerged: 88 percent of respondents say they usually turn to their physician to validate information they get online and 88 percent also said they usually turn to other sources to validate information they get from their doctor.

What’s really most exciting to see as the e-patient community has grown and matured in its use of social networks is the emerging evidence showing that this use of information from online sources – even in its current imperfect state – is truly helping improve peoples’ health. If product manufacturers are unable to fully engage in online discussions and serve as an information resource because of fear of regulatory actions stemming from unclear guidelines, then enormous amounts of information are missing. That’s information that could potentially be helping more and more patients.

Susannah Fox’s e-patient.net blog post about the impact of online medical information sets an important context. If one of the guiding principles for the medical community is to “first do no harm,” we should consider the data Susannah shared in her post:

“In a 2008 survey we conducted in partnership with the California HealthCare Foundation, just 3% of e-patients said they or someone they know has been harmed by following medical advice or health information found on the internet, a number that has remained stable since 2006. Meantime, 60% of e-patients (or 42% of all adults) said they or someone they know has been helped by following medical advice or health information found on the internet. That’s an increase from 2006 when 31% of e-patients (25% of all adults) said that.”

It is imperative that we, as health communicators, give ample weight to the patient perspective as new guidelines for medical product manufacturers are being evaluated. Although the proportion of patient perspectives is low among FDA hearing presenters, patients and their advocates are making their voices heard through forums such as Twitter, fdasm.com, e-patients.net blog and other networks. As is the trend with many of today’s conferences, often the most insightful discussions come from the real-time conversations going on behind the scenes in these online forums, which can give a sense of what is resonating, what additional questions are emerging, and what is being misunderstood.

This real world of how patients are already using online resources must be something all of us involved in medical communications – from manufacturers to regulators to advisers – consider closely as this important discussion at the FDA continues.

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