You are diagnosed with a disease. You are scared. Your doctor has more information than you do but, you are the one who has to agree or disagree to proposed treatments. You think you have the power of the Internet within reach. When you get home you will search and read. Within the same moment that you devise your web-based plan, the doctor – who, disturbingly, you have met for the first time at this appointment – says to you, in an emphatic fashion, “Don’t Google it.”
In The New York Times on Sunday, May 19, 2013, Allison Hersh London, chairwoman of the Young Leadership Council at the Bachman-Strauss Dystonia and Parkinson Foundation, shares her frustration with the lack of awareness of dystonia and the toll it takes on her and others suffering from this perplexing neurological disorder. In an op-ed titled Disease and the Public Eye, she mentions being envious of all the other patients whose disorders are supported by celebrity spokespeople – the effective conduits to lots of attention and, more importantly, lots of money for research.
If Google over-stimulates, in what professionals believe to be deleterious to the patient, then how does the patient become empowered to make life-altering decisions? Who can they turn to? The superficial public belief, that leaves the patient less than satisfied, is that advocacy groups want funding, doctors want control, scientists want prestige, Washington wants votes, and pharmaceutical companies want profits.
At BBK Worldwide, we believe the answer may indeed lie within a cooperative and intensified sphere of influence between all these players. Recently, we introduced a product called Health Info Gizmo. It is basically an app for patients that allows them to better understand their condition and easily search for clinical trials. It is not the programming bells and whistles that make this product so significant rather, it is the thinking behind the app that is most noteworthy. Health Info Gizmo’s job, as an “information filter,” is to house content that is equally endorsed by advocacy groups, the medical community, and pharma companies. It represents a microcosm of what industry analysts believe to be the key to cure: Cooperation.
Without being glib, maybe the doctor’s advice to “not to Google it” makes sense. Maybe the proliferation of information has created a new kind of confusion. It is no longer important what one can memorize or find, it is how information is interpreted and used that is most crucial to responsible awareness. In essence, Internet usage is now dependent upon biased filters of data from individual companies, which of course, must place their organizational objectives as key to information design and dissemination. But it seems logical that a cooperative source has a better chance for endorsement and success. Creating a mutually beneficial content environment has advantages for all the parties tasked with the information filter’s design and implementation.
Maybe joint efforts have the power we so lavishly provide our celebrity spokespeople. If an advocacy group can contribute to content without fear that their involvement will mean endorsement of one treatment over another, and thus pharmaceutical companies can effectively and efficiently reach sufferers through these groups, everyone wins.
Let’s be clear – awareness generates funding, and funding generates research. The simple truth however, is that without patient involvement, research results, of foremost importance to all, remain elusive. Have no fear, you can, and should, “Google that.”
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