“But Google said…” Citizen Science in a Web-Enabled World

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By Steve Toman, Account Director, Managed Markets, Palio

Imagine a meeting of primary care physicians, the kinds of dedicated healthcare professionals who serve as the backbone of thousands of office visits each day. Get them in a room and ask, by show of hands, which is preferable: An under-educated patient who knows nothing about his illness, or a highly-informed patient who walks in the door loaded with knowledge and research?

Under the warm lights of the conference room, it’s a safe bet that the majority would prefer to treat the highly-informed patient. But later, over cocktails, nearly every practitioner would be able to share at least a few horror stories about patients who walked in the door knowing – with certainty as complete as it was incorrect – what was wrong with them. In many cases, the physician probably spent more time talking the headstrong patient out of an errant self-diagnosis than explaining the actual condition and discussing appropriate treatment options.

The sheer breadth, depth, and commoditization of information available to medical consumers these days means that it is increasingly common for patients to be enthusiastic online researchers. In fact, a 2011 Consumer Reports study revealed that 61% of patients reported that they had read about their condition on the Internet. Combined with increased use of social media, that invites opportunity for medical misinformation or misinterpretation.

Doctors are not convinced that online research is truly helpful. Almost half of physicians surveyed as part of the same research said online research helps very little or not at all and merely 8% thought it was very helpful.

What’s a healthcare professional to do in a world where patients are armed with the Web, an army of socially connected armchair medics, and mobile apps sponsored by pharmaceutical or medical-device companies? Helping patients become more effective citizen scientists, and improving practitioner-patient communications starts with the basics:

Be a guide, not a naysayer. Rather than asking patients to put down the keyboard and step away from the Google, physicians should suggest ways they can become smarter researchers. For example, they should discuss the value of sticking to a few reliable sites, like the Centers for Disease Control and Prevention for information on infectious diseases, the Food and Drug Administration for drug information, MedlinePlus for information about conditions and diseases, or the National Cancer Institute for information on cancers. High-quality academic center sites, such as those of the Mayo Clinic and the Cleveland Clinic, can also ensure patients have access to accurate sources of information.

Understand how patients consume information. Are they constantly monitoring their blood sugar with a smartphone app, searching from their personal computer, or getting input from a friend or neighbor about a condition? Understanding how patients gather and consume health-related information is a key to providing crucial, authoritative care information with context and in a manner that’s most likely to be absorbed.

Applaud the effort, if not the information itself. It’s in everyone’s interest to have engaged, informed patients. So, even when the information and self-diagnosis a patient brings to the table is little more than a glorified wives’ tale, healthcare professionals should respect and even encourage the effort, even as they steer the patient to more authoritative sources. And remember, not everyone will enter the brave new world of self-diagnosis via the Internet – 37% of patients surveyed preferred to trust their doctor’s judgment on all treatment decisions.

Citizen science is here to stay, so practitioners need to guide patients to be effective partners in their own care. If patients are taking on an increasingly empowered role, the roles of the physician, healthcare professional, manufacturer, and patient educator need to evolve along with it.

Palio is an advertising agency revolutionizing pharmaceutical and healthcare marketing to create experiences that will Never Be Forgotten.

 

 

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