The importance of dogged research from a patient's perspective

Dan Duffy dan@thehalffund.org
Doug Lindsay dmlindsay@gmail.com
Sarah Kugler skugler5@gmail.com
Courtney Sermone courtneysermone@gmail.com

Abstract

Intro: You’ve been given a diagnosis. The disease is serious, but you have serious medical professionals working on it. You say, ‘I think I’ll have a look for myself.’ You research incessantly, and are now another addition to many a physician’s worst fear: patients who think they know better than the doctors, themselves. But what happens if and when you actually do know better?

Pt 1: Once thought to be a disease of reproductive organs, Polycystic Ovarian Syndrome is now known to be triggered by metabolic means. While research has done wonders in discovering how the disease works, it has done little to educate much of the medical community on the myriad of effects to a patient. Most doctors tell patients to “lose weight”. The irony is that the disease makes this virtually impossible. Diagnosed at 12, Courtney Sermone has turned herself into a patient expert of this disease, not just because she lives with it, but also because she has taken the time to learn it intimately.

Pt 2: More and more young adults are diagnosed with cancer each year, and some forms are highly aggressive and difficult to treat. Sarah Kugler knew this well. She used all means necessary to become an expert on what treatments could lead to her remission. Imagine her shock when her doctor prescribed a methodology that she already knew would likely kill her. Imagine his shock when she fired him on the spot.

Pt. 3: His mother was dying of a disease without a name. After decades of looking, doctors couldn’t even place her condition in a category. Doug Lindsay watched it happen. Then at 21, her symptoms became his. Whatever it was, it was killing him too. He tackled it scientifically, devouring medical tomes until he theorized that chronic autonomic nervous system dysfunction was to blame. It would take ten years of his own research before he got the chance to bet his life on a long shot surgery he had developed to cure a condition that doctors said didn't exist.

Pt. 4: Dan Duffy had lived through stage-three testicular cancer, but was left with a ton of questions that nagged him incessantly. At CancerCon, armed with little more than a laptop, Dan asked 5 questions to 64 people affected by cancer, with the results compiled for a five-week blog series for the Huffington Post. The results: almost every single person read another’s answer and said, “God, I really wish I would have known that”. This was literally a creation of data participants didn't know they needed.

Conclusion: The forgotten audience in the accumulation of data increasingly seems to be patients, who have an entirely different set of data needs than health care providers. Seeing this need, patients are taking a much more active role in disseminating existing data, and even creating their own. Using time, instinct, and an indefatigable knack for dogged research, many patients are able to enrich, and in some cases, save their own lives. They're also giving providers a resource for useable data extrapolation.
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