Engaged Patient Kim Goodsell on “Deciphering Her Own Genetic Mutation”

September 15, 2014 | Reply More

Kim Goodsell small webWLSA friend, Kim Goodsell was recently the subject of The Atlantic’s “How One Woman Deciphered Her Own Genetic Mutation” article. Read her story (http://theatln.tc/1q8tEMS) and the inspired comment from WLSA’s CEO Rob McCray below:

“I know Kim and CB and her story is unusual but it is certainly within the new normal range of (non-clinically trained) individuals taking advantage of increasing access to sources of knowledge in an effort to diagnose rare illnesses or manage health care conditions. Medical knowledge will be organized and made accessible. This is a democratization process. It is disruptive to traditional purveyors of knowledge and services and it is understandably troubling to professionals who become “vendors,” lose social status and often times lose income. The trend is irreversible and will have extraordinarily more benefits than costs. Uniquely among other sectors of life and the economy that have been disrupted by digital technologies and communications, this is a virtually universal human (and business) opportunity since, unlike entertainment, consumer products and even online social communities, human health needs are more universal. For example, a genetic scan or an ECG, BP or blood glucose measurement have similar diagnostic relevance in people around the world. Even Beyoncé does not have that reach. There are not very many Kim Goodsells in the world.  My take on what all people want with respect to health care is as follows: People want to be healthy, productive and independent.  We want to be in control of our health and health care.  We want only the amount of health care that we need. Confronted by symptoms of concern, we want to know: •Whether they require medical attention, •How soon the attention is required, •Who they should see, •What they should expect and ask when they get there, •How much it will cost.”

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