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Welcome to PKD Notes

May 3, 2009

I’ll be posting news, information, and other updates on Polycystic Kidney Disease. On Twitter too: follow @PKDnotes for quick updates.

I know the PKD Foundation has a great site including news on PKD, but this blog is from a patient’s perspective. And readers can comment directly on the posts and talk to me via Twitter if they want.

I also consider myself an ‘e-patient‘. I read and research extensively on my medical conditions and avoid doctors who have the old-school ‘Doctor-is-God’ mentality. I prefer to work with doctors who are willing to discuss the research I’ve done and consider what I have to say as valid, and willing to explain something if I’ve got it wrong. Just because I do not have a medical degree doesn’t make me incapable of understanding human biology, nor does it mean it’s acceptable for a doctor to tell me I’m wrong without offering an explanation. I’m well aware of scientific principles and am a skeptical person. I don’t think there’s such a thing as “alternative” medicince, either it’s medicine or it’s not. I’m equally skeptical of the motives of pharmaceutical and medical device companies and the influence they have on clinical researchers, doctors, and public health policy.

The future of medicine and health lies in doctors being willing to take on a collaborative, egalitarian approach to health with their patients. Just as the most successful companies and service providers today are the ones engaging in conversation with their customers online and offline and working with rather than against social networking and information availability, personal service providers must do so too. There will be some people unable or unwilling to take on this very active role in their own health, but those people are probably going to have friends and family who will do so. No longer does a person have to rely on a controlled flow of information from doctors. You are able to go online, read the latest studies and news in peer-reviewed medical journals, search through gigabytes of information, and best of all, connect with other people who have the same health condition as yourself.

There are some doctors who seem deeply apprehensive about patients sharing information on health and doing independent research, largely based around the idea that patients are not able to understand medical concepts, and will self-diagnose and self-treat leading to worsening health, or death. This fear is unfounded, as reported in the e-patients White Paper. Online patient-to-patient health information, such as in forums, social networking sites, and mailing lists was found to be an excellent supplement to primary health care, not a replacement. People are using these online spaces to learn about what the latest research and treatments are, of which busy doctors aren’t always aware. They’re learning who the best doctors are for what conditions, and where the best hospitals are. They’re learning about how to manage their condition day-to-day as well as medications, surgeries, and side effects. An online patient forum in which I participate (non-PKD related) has just produced a paper commenting on the differences between textbook and guidelines, doctor-provided information, and the reality of the particular condition. This is patient empowerment and there is no going back.

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